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					ChinaKidz – Children’s Hospices: Case Statement


                    ChinaKidz Children’s Hospice Service

                                  Case Statement


  ChinaKidz, a UK registered charity, will establish the first children’s hospice service in
                                           China.

An old Chinese proverb says ‘Those with white hair should die first” Unfortunately, in real life this is
not always the case, and there are children throughout China, with incurable illnesses, who need the
support of dedicated hospice care to see that their last days are spent in a comfortable, loving and
supportive environment.

China’s 1st Children’s Hospice

ChinaKidz plans to provide children’s palliative care services in China’s first specialist Children’s
Hospice unit, in Changsha. Government Officials gave approval on 24th of November 2008. They liked
our plan and want ChinaKidz to co-operate with the Children’s Welfare Institute to implement a
children’s palliative care service for abandoned children as well as for families, aiming to support
them and avoid the pressure to abandon their sick baby/child. This is an exciting and groundbreaking
project in China; even in many other parts of the world children’s hospice services are not available.

Children’s hospice services provide specialist care and support to children who are not expected to
live to reach adulthood – and their families – from the moment of diagnosis onwards.

The World Health Organisation definition of paediatric palliative care is:

"The active total care of the child's body, mind, and spirit, and also involves giving support to the
family.”

Why a Children’s Hospice?

In the UK, and around the world, children’s hospice services help children and families with the
emotional and physical challenges they face, helping them to make the most of life. They welcome
the whole family for a break in a home-from-home environment or in the comfort of their own home.
They also offer a diverse range of other services including symptom control, therapies (such as play,
art and music therapy), end-of-life care and bereavement support for all family members.

ChinaKidz now aspires to provide a similar level of palliative care and services for life limited children,
and their families, in China. We will begin in Changsha, but we won’t stop there. Our vision is to
continue to expand the provision of children’s hospice care throughout China; and we aim to establish
our first 10 units by 2020.

Children’s hospice care is holistic and family-centred, delivered by a multi-disciplinary team. They
work closely with each other and with other professionals involved in supporting the family to ensure
continuity of care and that all needs are met, whether physical, emotional, social or spiritual. In
providing our services we will work with and train Chinese nationals in palliative care and related
therapies.




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ChinaKidz – Children’s Hospices: Case Statement


The Need

According to International China Concern, although China is experiencing rapid economic growth,
“there remains a deficit in social welfare for the disadvantaged, especially the disabled. Hundreds of
thousands of babies and children continue to be abandoned each year. Training for Chinese nationals
working in social welfare is limited and many have little or no understanding of how to care for those
with special needs. Support services for families with special needs children are limited and in most
areas, do not exist.”

There are no "official" statistics regarding the true number of life limited or life threatened children in
China, but according to information that has been reported by the authorities:

There are reportedly about 66,000 children living in welfare institutions; there are 224 children's
welfare institutes, and 1200 social welfare institutes across the country.

Citation: Xinhua News, xinhuanet.com, "China Needs 200,000 Care Workers for Orphans and Disabled
Children."

A Ministry of Civil Affairs report in 2005 said that there are 573,000 total number of orphans in China
(these include true orphans, HIV orphans, abandoned children, boys left behind after mother
remarries, etc)--the vast majority of these children live in the countryside with extended family.

80.5% of institutionalized children across the country are disabled, and this is attributed to the lack of
affordable healthcare and social support for parents of ill or special needs children in China.

Citation: Shang Xiaoyuan, Wu Xiaoming and Li Haiyan. "Social Policy, Social Gender and the Problem
of Infant Abandonment in China." (Shehui Zhengce, Shehui Xingbie yu Zhongguo de Ertong Yiqi
Wenti"). From Youth Studies, 2005, No. 4.

Since 2005, ChinaKidz work in special care units, with abandoned very sick and dying
children, has shown that over 50% of the 152 children admitted in one year had severe
medical conditions and needed palliative/end of life care, i.e. 78 died. The majority of
those were under 6 months old.

There is now an urgent need to provide Children’s Hospice units to deliver paediatric palliative care
services in China for these babies and children.

ChinaKidz has made a commitment to make this possible; and we aim to have our first
unit open, in Changsha, by September 2009.

Aims of Chinakidz Children’s Hospice service:

    1. Working in collaboration with appropriate services, which aim to support families in the
       community with disabled children to prevent abandonment, ChinaKidz will provide a safe and
       caring place for respite or end of life care where that is the family’s choice – a children’s
       hospice.

    2. ChinaKidz will work to ensure the provision of palliative care services for families with babies
       or children who are newly diagnosed with life limiting or life threatening illness.

    3. Where babies/children are already abandoned and there is no palliative care service to
       provide such a service.

    4. To develop a model of care that can be replicated in other places where the policy of
       abandonment prevention is embraced.

    5. To ensure local ownership and management within 5 years.

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    6. Where a very sick abandoned child survives and has chronic care needs they will be referred
       to an appropriate organisation for ongoing care.

    7. Linking with related support services where they are available to create a network, enabling
       appropriate care to be obtained for the child and his/her family.

    8. Developing and providing a range of training programmes for staff and parents or accessing
       programmes already available.

    9. ChinaKidz will work with the local authorities and health care providers. We will also work
       collaboratively with other charitable organisations, complementing their important work
       caring for abandoned and disabled children in China and linking to their established network
       of services.

The Challenges:

There are significant socio-cultural differences between the West and China, in terms of attitudes to
ill, disabled and dying children. This has led to widespread abandonment of these children.

Abandonment of Disabled Children

There is a significant problem of abandonment of disabled and very ill children throughout China. In
outline, some of the key reasons for this include:

    1. China’s one child policy. China’s future economic success is seen to depend on the
       cultivation of modern, cosmopolitan children, those who are seen as economically unviable
       are often unwanted.

    2. Selective child abandonment. Female children are not viewed as providing for a family's
       economic wealth therefore they are often illegally abandoned in the hope of producing a boy,
       particularly if the girl child has a health problem. If families can only have one (or two
       children in rural areas) then the pressure is very much towards having a healthy male child.

    3. Superstition and beliefs. The stigma associated with having a disabled child is also linked
       to the superstitious belief that having a disability is punishment for past-life sins. The Chinese
       blame the mother if a child is born deformed or imperfect. In former times infanticide often
       occurred in such circumstances, to spare the mother shame, public humiliation and ostracism
       by in-laws. Today, although there is still a possibility of infanticide in remote rural areas,
       more often babies are left where they will be found or taken to an orphanage.

    4. Poverty is a root cause of child abandonment. Poverty, especially in rural areas,
       combined with poor social welfare systems create a situation where those who are not
       financially capable of taking care of the child are more likely to abandon it. The social welfare
       and healthcare systems in China are undergoing reform but have major problems, especially
       in areas away from the east coast cities and Beijing.

    5. Costs of medical treatment. These are prohibitive to the majority of Chinese and the
       quality of medical expertise in many regions can be poor.

    6. Loss of income. If a parent wants to care for a sick child they face the problem of reduced
       income and loss of ability to work unless there is a grandparent or other older relative able to
       care for the child. Sadly, when the older relative becomes unable to provide the care, or the
       child’s health declines further, the child is at risk of being abandoned.

    7. Access to good quality information. The majority of the population is still largely unable
       to access good information regarding possibilities for treatment or help for a sick or disabled


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        child. Additionally, there is an inevitable degree of professional misinformation regarding the
        quality or longevity of a baby’s life, due to poor diagnostic techniques and lack of specialist
        training.

Many of the children who are abandoned have clearly been loved, with a family no longer able to care
for them. Often left with a personal note and small amounts of money, in a desperate attempt to
ensure their child will be cared for.


Attitudes to Dying Children

From a western perspective, there exists what might be described as a ‘desert of compassion’ with
regard to attitudes to death in childhood.

According to Chinese custom, an elder should never show respect to someone younger. So, if the
deceased is a child their body cannot be brought home and must remain at the funeral parlour; no
funeral rites are performed either since respect cannot be shown to a younger person. The child is
thus buried in silence and there is no official period of mourning which is done in private and silence.

Additionally, in the culture of ancestor worship, the death of a child means the ancestor of the family
did something terribly wrong and this is seen as a punishment for that ‘crime’. This crime brings bad
luck and shame to the family, so people (both relatives and people outside the family) will avoid any
reference to the dead child, and parental grieving is therefore very private and often a very
suppressed emotion. As one would expect many health problems arise as a result of the inability to
grieve and remember the child.


Chinakidz: caring for dying children and their families in China

Recognising that these are difficult cultural issues, Chinakidz is working towards providing a
supportive environment for the many babies and children who are left to die alone; as well as those
families who would choose to receive this care, despite the pressures they may feel from their family
and communities. We aim to provide the care, support and environment – a ‘home’ and place to die;
to assist families who do not feel they able to take their dying or deceased child back to their family
home. A place where those families, especially younger generations, are able to stay and grieve
privately, whilst receiving the support to express their emotions, removed from the feelings of blame,
guilt or shame.

Our experience, over the last four years, providing palliative care to abandoned children in state run
orphanages, has shown that loving end of life care has a great impact on the quality of life, and
death; helping to transform attitudes and cultural beliefs.

As it is against the prevailing culture to care for abandoned, dying, deformed children, even many
nanny carers initially found it very hard to bond with these children or show any emotion - particularly
when a child died. Through Chinakidz work these nannies experience the joy of seeing babies and
children ‘come alive’ and start to smile, in response to nourishment, care and love. Over time we
have seen a real softening of hearts and attitudes, with the nannies really loving their children. This is
illustrated by the following story of one child cared for by Chinakidz:

JT’s Story

“ Jiang Tong (JT) was admitted with a complex heart condition he was very blue and breathless and
had that worried little look all the time. His nannies grew to love him and when surgery was not an
option for him and he was in heart failure, they were upset. As he became increasingly unwell and
uncomfortable his nanny became very concerned that he wasn’t eating or drinking and was very
fretful. It was evident he was in the final days of his life and needed some stronger medication to
alleviate his suffering. I was able to tell the nannies I did not expect him to live much longer. The


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beautiful thing was that his nanny asked if she could bath him and change him, I advised her to just
sponge him down which she did and then she put him in a lovely little outfit and made him
comfortable, with tears in her eyes.

He died during that night in his night nanny’s arms. This was the third death within a week in that
unit and all were children who had been there some time, so their little personalities were well known
and they were loved. To see the nannies cry openly out of love for these little ones is truly humbling
and gives us great hope for the future impact of this work.”

In my experience, as time goes on the nannies, and other staff, become more and more open to
caring, loving and expressing their emotions and letting go of their cultural inhibitions.


ChinaKidz Children’s Hospice services:

Our dedicated units will provide the following specialist care and support:

Nursing and medical care - a team of trained nurses and medical staff sympathetic to and
knowledgeable in palliative care medicine will be recruited/trained and available for caring for the
child (and family where they have one) in the community or in the hospice. We will aim to recruit and
train Chinese nurses and doctors who will be supported by experienced western volunteers.

Respite care - to provide a break for families according to need and availability. The child could
come into the hospice, or may be fostered locally on a short term basis.

Emotional/psychological support and counselling - all staff will be trained to provide a
supportive and caring environment, but where families are distressed and in need of more skilled or
in depth support trained Chinese counsellors will be available for therapeutic counselling.

Therapeutic services - to improve quality of life. For some children this may mean therapy aimed
at comfort and/or decreasing pain through gentle massage, music or play therapy.


ChinaKidz Funding Strategy

In line with the Organisational Business Plan for ChinaKidz Children’s Hospice service, we have
developed a Fundraising Strategy to determine how we will secure the funding required to establish
our first unit; and ensure sufficient revenue income to provide its specialist services each year.

In outline, we aim to achieve funding from a diverse range of sources, which will contribute to a more
sustainable funding plan. These sources include:

    Chinese Government via Civil Affairs
    Chinese Charities
    ChinaKidz fundraising programme, including major Grants funding (UK based charities)
    International charities – Trusts, Foundations et al. with an interest in such causes
    Partner organisations/charities, to provide specific funding and/or fundraising expertise and
    resources (e.g. ICC)
    Links with children’s hospices, and umbrella organisations that support them, in the more
    developed world




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ChinaKidz Values and Beliefs:

The provision of our children’s hospice services will be underpinned by our core values and beliefs:


    Every child’s life is valuable no matter how long or short and is not dependent on what he or she
    can contribute to society.
    Every child is worth love and care and to feel safe, wanted and affirmed throughout their lifetime.
    Every dying baby or child should be loved and cherished and die loved and with dignity.
    Every child should be given the opportunities and help to achieve their full potential.
    Given information, support and choices many parents would not abandon their child.


As a palliative care nurse in China, I have tried to convey my personal experience of caring for one
dying abandoned child, in the following words,

‘His Hand’

It was his left hand that really spoke to me.

When first I saw him he was lying in a shared cot in the ‘very sick baby room’, pale with gummy eyes
and cracked dry lips, hardly making a sound under the layers of padded quilts.

Looking under the quilts I saw the thin body of an 8 month old boy, every bone was visible, his skin
was like paper, dry and crinkly. As I touched him he turned his head towards me and whimpered, his
eyelids parted and I could see his milky blue eyes flickering, blind.

As he settled into our unit the only hope I had was that he would not suffer any longer and would die
feeling cared for and touched by kindness.

Our Nannies are very special and know how to comfort a child. He does not like to be held, maybe he
is in too much discomfort – he simply wants to die.

As I sit on the floor beside him, talking to him and stroking his head, his left hand moves and I take it
gently in mine.

His cold fingers curl around mine and we connect.

How painful it is to connect with another’s suffering, to bear that burden with them, to feel helpless to
change the course of things past for him, yet a privilege to be able to ease the future.

Feeling his hopelessness turn to peacefulness.

Hearing his breathing like wisps of air, feeling his hold on life embodied in his hand holding mine.

His weakening body; Watchful carers wait with him in his last hours, willing a power greater than
ours to take him to freedom.

Let his spirit soar out of this captivity - let it be done.




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ChinaKidz – Children’s Hospices: Case Statement


‘Butterfly Home’ - China’s first Children’s Hospice - From Vision to Reality

The Butterfly Home in Changsha will be ‘housed’ on one floor of the old children’s orphanage,
ChinaKidz will provide 18 beds for abandoned babies and children, a 2 bed high dependency unit for
very sick newborns who may be in need of a little extra care whilst assessing their conditions and 6
family rooms for use where families can be supported during critical phases of their child’s shortened
life.

We would like to ask your Trustees/Company etc. (to be versioned according to type of
funder/prospective donor) to consider supporting this pioneering project and help ChinaKidz to
establish China’s first Children’s Hospice service; providing a caring and loving environment for many
very ill and dying babies and children, and their families, every year.

Our primary target now is to raise £60,000 to enable the refurbishment, to include rewiring, flooring
and plumbing to a good standard. We expect the equipment costs for the unit to be in the region of
£40,000 to include medical equipment and specialist rooms i.e. the high dependency unit, soft play
area and sensory room of our first children’s hospice unit in Changsha.

We would be very pleased to discuss any questions you may have about our plans, and how your
organisation could join us in making this vision a reality.

I may be contacted on tel no. +86 13739076663, email Lyn@chinakidz.org or Skype jinlin49.

I very much hope you will be able to help.

Thank you, on behalf of all those for whom we will care.


Yours sincerely,



Lyn Gould RGN Dip.N (Lond)
Director of Care
ChinaKidz Children’s Hospices




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