COVID-19 and Children's Palliative Care

The past two years of the COVID-19 pandemic was a concerning time for everyone and while most restrictions have been lifted and life is returning to some semblance of normality, there is still the danger that a new variant could emerge and engulf us once more. We are also aware that parents of babies, children or young people with complex medical conditions and palliative care needs will have added concerns around safety and infection as well as the very real possibility of infection of those essential healthcare workers who are providing care to these children as well as the older “grandmothers” who are caring for children in the community and who are more vulnerable to infection.

We hope to answer some of your most pressing and frequently asked questions on this page and direct you to some helpful resources for more detailed information. If you have other questions, please feel free to send these to us on info@patchsa.org and we will do our best to respond and advise. We will also keep this page updated as the situation changes and develops in our country.

For the best possible and most up-to-date medical advice on how to protect yourself from getting or transmitting the virus, we suggest you regularly visit the World Health Organization website and the National Institute for Communicable Diseases.

SOUTH AFRICAN CORONAVIRUS (COVID-19) 24-HOUR HOTLINE NUMBER:

0800 029 999

Supporting Grieving Children in the Time of COVID-19

We are in the midst of a global pandemic which has had an enormous impact on South Africans both young and old. Sadly some families already have or will experience the death of a loved one. The death may be due to COVID-19 or it may be completely unrelated. It’s natural to want to protect children when someone they love dies; however, we need to talk to children to help them feel safer and more in control. The best thing to do is to provide them with honest, age-appropriate information about death. It’s painful to see a child upset, but children cope better with sad news when they are told the truth. Helping children understand death and grief will vary depending on the child’s age and developmental stage.

This FREE Patch Academy Course covers the following key elements:

Define the terms loss, grief, mourning and bereavement
Understand how children will experience secondary and cumulative losses during this time of COVID-19
Differentiate between the different types of grief
Understand the ways in which children and adolescents grieve
Describe the grief reactions children display
Describe how children understand death and dying
Know how to discuss death with a child
Know how to support children who are grieving at this time of COVID-19

TAKE THE COURSE

Resources

We will add resources to this list as and when they become available.

Palliative Care and COVID-19

FREE Patch Academy course: Supporting Grieving children in the Time of COVID-19

Palliative Care and COVID-19 Resource website: http://globalpalliativecare.org/covid-19/

Resources from the Worldwide Hospice Palliative Care Alliance: WHPCA COVID-19 Resources
Resources and information from International Children’s Palliative Care Network Click here
Resources from the European Association for Palliative Care: EAPC COVID-19 Resources

A Field Manual for Palliative Care in Humanitarian Crises This book has been kindly made available in this time of crisis by Oxford University Press

APPM Clinical guidelines for children and young people with palliative care needs in all care settings during the coronavirus pandemic Clinical guidanceCOVIDPaediatricpalliativecare

The South African National Institute for Communicable Diseases (NICD) have developed a HCP COVID-19 Toolkit which can be accessed from their website.

COVID-19 Clinical and Operational Guideline for Mothers, Newborns and Children

National Department of Health, SA
March 2022

This guideline complements the National Institute of Communicable Diseases (NICD) guidelines published as “CLINICAL MANAGEMENT OF SUSPECTED OR CONFIRMED COVID-19 DISEASE”, which are updated regularly. It incorporates guidance on COVID-19 from the WHO, professional bodies and current literature on how patients are managed elsewhere.

Download the guide: COVID-19 MNC Guideline 04 04 2022

Psychosocial support

Specific phrases & word choices that can be helpful when dealing with COVID-19: COVIDLanguageGuideFinal
Mitigating Stigma and Fear: Towards an Appropriate Christian Response to COVID-19: COVID-19 Stigma DADDS 2-pager 8-4-20
Helping Children Say Goodbye From Afar

General Information

COVID-19 coronavirus explained to parents of young children UNICEF South Africa
COVID-19 in Children: What should we worry about? Dr.Sabrina Bakeera-Kitaka
Nelson Mandela University Information posters for distribution in English and isiZulu
COVID-19 guidance based on humanitarian standards from Sphere in multiple languages

Join the Rare Diseases South Africa COVID-19 News Channel using Telegram: https://t.me/joinchat/AAAAAEZW4nK8_dC6ue7O7A

Map of global infections

Map of Coronavirus statistics around the globe (This map is regularly updated)

Books and resources for children

The Story of the Oyster and the Butterfly: The Corona Virus and Me (Helping children deal with their anxiety and feelings)
A coronavirus coloring book from St. Jude Children’s Research Hospital: Helping kids understand COVID-19
My 2020 COVID-19 Time Capsule – A free download from Long Creations with lovely activities for children to record this historic time
Because of COVID by Mel Churton (Registered Psychologist)

My Hero is You – How kids can fight COVID-19

My Hero is You – YouTube video based on the book

Frequently asked Questions

1. What is coronavirus?

Coronaviruses are a large family of viruses which may cause respiratory infections ranging from the common cold to more severe diseases such as Middle East Respiratory Syndrome (MERS) and Severe Acute Respiratory Syndrome (SARS). The most recent Coronavirus disease is COVID-19.

Common signs of infection include respiratory symptoms, fever, cough, shortness of breath and breathing difficulties. Recent reports include loss of taste and smell. In more severe cases, infection can cause pneumonia, severe acute respiratory syndrome, kidney failure and even death(WHO).

Find out more about coronavirus in South Africa on our National Department of Health website. The National DoH have provided a document of frequently asked questions (FAQs) about the virus which you can download here.

2. How is coronavirus spread?

The virus is thought to spread mainly from person-to-person:
Between people who are in close contact with one another.
Through respiratory droplets produced when an infected person coughs or sneezes.
These droplets can land in the mouths of noses of people who are nearby or possibly be inhaled into the lungs.
People are most contagious when they are at their sickest but it is believed that spread might be possible before people show symptoms of the illness. It is also possible for people to get COVID-19 by touching a surface or object that has the virus on it and then touching their own mouth, nose or eyes.
The virus that causes COVID-19 spreads easily and sustainably.

3. What precautions can be taken to reduce transmission?

The World Health Organization encourages everyone to do these 5 things to help stop coronavirus.

1. Wash your hands often
2. Wear a mask when you go out
3. Cough and sneeze into your elbow
4. Keep a safe distance from others (2 metres)
5. Don’t touch your face

DO’S & DONT’S

-Wear a mask that covers your nose and mouth when you are out
-Wash your hands regularly and often for 20 seconds, with soap and water or alcohol-based hand rub
-Cover your nose and mouth with a disposable tissue or flexed elbow when you cough or sneeze
-Avoid close contact with strangers and people who are unwell
-Stay home and self-isolate from others in the household if you feel unwell
-Stay at home unless it is absolutely necessary to go out

Don’t

-Touch your eyes, nose, or mouth if your hands are not clean

4. Is it true that children don’t get the coronavirus as easily as adults?

Available evidence shows that children do not appear to be at higher risk for COVID-19 than adults. Adults make up most of the known cases to date. However, it needs to be emphasised that the disease poses a far greater health risk to those with compromised immune systems, including cancer patients in treatment. Any child with an illness or condition that compromises their immune system should be protected from the virus with extra care and vigilance and only be in contact with those people directly responsible for their care. It is important to keep in mind, however, that children may be disproportionately affected by measures taken to control the outbreak, such as school closures and physical distancing measures. Special attention needs to be paid to prevent and minimise negative consequences for children as much as possible.

5. How can we protect children who have serious life-limiting conditions from COVID-19?

The most important recommendation is to provide a strong layer of protection by vigorously following the precautions outlined above while ensuring the child’s environment is kept as clean and as sterile as possible. Wipe down and regularly disinfect all surfaces in the home, particularly ‘high touch’ surfaces such as door handles, table surfaces, kitchen counters, bathroom surfaces, taps toilet seats and handles, light switches, TV and gaming remote controls, etc. Don’t forget to regularly disinfect computer keyboards as well as phone and tablet screens.

Any surface that the child may touch or come into contact with should be regularly cleaned and disinfected.

If your child develops symptoms of the virus immediately call your consulting doctor for advice. In an emergency, don’t hesitate to call for an ambulance or take your child directly to the Emergency Department of your nearest hospital.

6. What about children who have HIV?

While there is no strong evidence that people living with HIV who are compliant on ART are at an increased risk of contracting COVID-19 or if they do contract it they will experience a worse outcome, they should take every precaution to protect themselves. As with the general population, people with HIV and heart or lung problems as well as autoimmune conditions and cancer may be at a higher risk of becoming infected with the virus and of suffering more serious symptoms.

UNAIDS have made available an informative PDF entitled: What people living with HIV need to know about HIV and COVID-19 which can be downloaded here.
International Treatment Preparedness Coalition (ITPC) has provided guidance on COVID-19 and people living with HIV that can be downloaded from their website here.

7. What should I do as a parent or carer caring for a very sick child if I get COVID-19?

If you are a parent or carer of an immunocompromised child and believe you have contracted COVID-19 or been exposed to the virus it is important that you are tested to confirm the diagnosis. Phone your doctor for advice or the South African coronavirus 24-hour hotline number: 0800 029 999

Follow the precautions as described above and where possible put your child’s care in the hands of someone who is not affected. Wear gloves and a face mask if it is necessary for you to interact with your child and discard these safely and immediately after use.

8. Are there any guidelines for children’s hospices to follow to restrict and prevent the spread of COVID-19?

Most children’s hospices are creating their own guidelines and policies around COVID-19. What follows is a list of guidelines based on those created by Sunflower House Children’s Hospice that can be used by any children’s home or hospice caring for sick and vulnerable children:

Policy:

Create a Policy specific to your hospice which each staff member should be required to read and sign.

You can download an example of a policy from Sunflower House Children’s Hospice: Sunflower House Policy for COVID-19

Human resources:

-Decide on which staff members are needed to be in daily contact with the children and which could stay at home during this period of time.
-Restrict volunteers to only those who are critical to the care of the children.
-Staff must stay at home if they have any key symptoms for COVID-19, have been in direct contact with someone with COVID-19 or if a family member is ill with any illness that weakens them or may be infectious.

Training:

-The WHO provides online training on COVID-19 on their website.
-Provide training to every staff member and volunteer on COVID-19 and the precautions they should follow to reduce their risk of becoming infected.
-Provide training to the older children in your care and families on protecting themselves from COVID-19.

Assessment and Reporting:

-Check the baseline health status of every staff member and volunteer and assess for high risk.
-Do daily temperature checks on staff members, volunteers and children.
-Insist on daily self-assessment for symptoms for every staff member. Download an example of a self-assessment form here: Staff Self care
-Report any signs immediately to the Sister in charge.

Resources:

-Ensure the provision of sufficient soap, hand sanitizers and disinfectant for surfaces.
-Ensure the provision of sufficient masks and gloves for staff and volunteers.
-Provide closed bins for discarding of masks and gloves.
-Provide overshoes and protective clothing if needed.

Buildings and equipment:

-Strict cleanliness must be ensured at all times
-Use disposable gloves when cleaning all the rooms, cots and equipment
-Wash all surfaces with soap and water at the beginning and end of each shift and whenever you feel there has been possible contamination
-Wash with soap and water and then spray with alcohol 70% solution
-All cloths used to be used once only and then disposed of into a closed bin and washed in the washing machine
-Dry with paper towels and discard into a closed bin
-Spray bottles with alcohol sanitizer will be placed in every room and at the entrance to the facility
-Protocols for cleaning the house and maintaining cleanliness to be followed at all times
-Kitchen – clean surfaces with soap and water at the beginning of your shift and then after each time you work on the surface
-Spray cupboard handles with the alcohol spray
-Gloves to be worn correctly when preparing food and refreshments
-Toilets – ensure spray bottles with 70% alcohol spray. When using the toilet spray your hands, the door handle, handle to flush the toilet, toilet seat. Further spray the handles to flush and on the door when leaving and then wash your hands and dry with paper towel discarded into a closed bin.
-Bath and bathroom – clean all surfaces with soap and water
-Each child to have their own towel. Each towel to be put into a closed laundry bin after use and washed daily.
-Garden play equipment and furniture. Wash down daily with soap and water and after use. Dry in the sun.

Children:

-Allow children to spend as much time in the open air as possible if the weather is good
-Educate older children on hand washing and respiratory hygiene and supervise hand-washing
-Immediately isolate children who show symptoms of COVID-19. Contact the necessary authorities and get the child tested
-Children must continue to be able to play.
-Only use toys that can be cleaned effectively before and after play.
-Where possible have separate toys for each child that only they have access to.
-Children to clean their hands before and after playing with toys.
-After toys have been played with they should be put into a container for proper washing and cleaning before being played with again.
Staff to wash their hands before taking toys to the child and after taking them away.

Care of a dying child with Covid-19:

-Ensure one family member is able to be with the child, while following strict protective precautions
-Ensure that the child and family’s Goals of Care and Advance Care Plan are completed
-Follow the present policy and protocols for caring for a dying child
-Follow government directions for caring for the body
-Refer family for bereavement follow-up, telephonically to begin with

Care of children at home:

-Home care should be limited to essential visits and no routine visits should be made if the child’s condition is stable. The exceptions will be where the child is very ill or dying or shows new serious symptoms that cannot be managed over the phone.
-As far as possible the Home Care Team will maintain contact with all children and primary carers via WhatsApp, SMS and if possible, through visual discussion using Skype or WhatsApp video.
-All communication to be recorded in patient reports
-During the “lockdown” Social Development has directed their funded Community Caregivers to remain at home and this must be respected. Communicate can continue via cell phones.
-Children who require visits should be seen by a professional nurse protected by full protective equipment.
-All members of the Community Care Team must receive personal protective equipment and have received training on their use and disposal.
-All team members needing to use public transport will be given extra masks, gloves, clothing and hand sanitizer.
-All team members will receive the flu vaccination, Vitamin C, soap and personal hand towels for use at home.
-Team members must report potential symptoms of COVID-19 to the office, self-isolate until they receive a negative COVID-19 test.The vehicle used for home visits will be washed with soap and water each day and spray bottles of 70% alcohol hand and surface sanitizer will be available in the vehicle.
-The driver will have a stock of masks, plastic aprons and gloves in case he is required to assist with a patient.

Care via telecommunication:

-During the period of social isolating and enforced lockdown, providing care via telephone is an excellent option and can be carried out from the health professional’s home.
-Download a copy of the Paedspal Telecommunication Tool for COVID-19: Paedspal Telecommunication Tool

9. What information is available for medical and health care professionals on caring for sick children during the coronavirus pandemic?

Please see the information and resources listed a the top of this web page – we are updating and adding to this list as and when new information becomes available. In addition, the Royal College of Paediatrics and Child Health (RCPCH) have provided guidance for paediatric services. This guidance includes:

-Resilience and self-care
-Preparing for COVID-19
-Occupational health
-Safeguarding, looked after children and vulnerable children processes
-Pregnancy
-Working in community paediatrics
-Working in neonatal settings
-Working in acute paediatrics and emergency departments
-Guidance for Paediatric Intensive Care Services
-Isolation plans for parent-child combinations
-Paediatric scenarios
-Children at increased risk of COVID-19
-Downloads

You can access this information on the RCPCH website.

10. Who can I contact if I need specific help and guidance on caring for a child receiving palliative care?

In an emergency please contact the South African Hotline for COVID-19, your doctor or take the child to your nearest hospital. If you have any comments on the above or have questions that you would like one of our experts from the network to respond to, please send an email to info@patchsa.org and we will do whatever we can to assist you.