Malawi Home Based Care

Working to improve the quality of life of people affected by HIV/AIDS in Malawi

The Malawi Home Based Care Charitable Trust exists to financially support the College of Medicine Home Based Care Project in Malawi.

This project was closed at the beginning of 2019, its aims and objectives met.

For over ten years a dedicated team of nurses, health care assistants and volunteers worked tirelessly in the two poorest townships of Blantyre; Bangwe and Limbe. The aim of their work was to relieve the pain and suffering experienced by hundreds of people living with chronic illness, usually HIV/AIDs. The model of home based care that was developed was shown, following extensive external evaluation, to be both effective and resource appropriate for Malawi. The model was shared with other organisations, both Government and non-government, delivering home based care, and policy makers in Malawi and integrated into their work on many occasions.

To find out more about the College of Medicine Home Based Care Project click here and refer to the evaluation report.

While the College of Medicine Home Based Care Project has now closed, the Trust continues to exist, channelling funds to a few orphans that were taken on by the Project’s orphan sponsorship scheme. To find out more about the Orphan Sponsorship Scheme click here.

What the Project did

 

HIV widow with her 2 children

Background

The College of Medicine Home Based Care Project works in the two poorest townships of Blantyre (the commercial capital of Malawi) Bangwe and Limbe. The primary aim of the project is to relieve pain and suffering of people living with chronic illness, usually HIV/AIDS. 

Bangwe and Limbe have two of the highest HIV/AIDS prevalence rates in the country, due to rapid urbanization. The local hospital, the Queen Elizabeth Central Hospital, reports that approximately 75% of patients admitted suffer from HIV/AIDS related illnesses and most deaths are linked to this. With a chronic shortage of nurses, space, equipment, medicines and money the hospital is overstretched and unable to cope. Many more patients are never admitted to hospital and are cared for at home by family members. Nursing the chronically sick in their homes (home based care) both relieves the pressure on hospitals, and provides practical and more appropriate community-based support for people living with AIDS.  People as a rule prefer to die at home. 

The project was a community outreach project of the College of Medicine, University of Malawi. It was set up in 2005 and was funded by the Diana, Princess of Wales Memorial Fund, Comic Relief, the Just Trust, Network for Social Change, Strathspey Charitable Trust, Trusthouse Charitable Trust and by private donors.

 

Some of our staff with the home based care volunteers

Drama group performance to members of the community

The project team and what they did

The project was run by a dedicated team of 2 trained nurses, 4 home based care assistants and approximately 150 community volunteers. Initially volunteers would visit members of the community who they have heard were critically ill. They referred those that they felt were in need of home based care to the nurses. A nurse and home based care assistant then visited and provided patients with basic nursing care, counselling, medication and pain relief and supported and adviced the patients' carers. The team carried out approximately 1,700 home visits of patients per year. The roads were rough and they would get around by motor bike, a 4x4 vehicle or on foot. The team carried a wide stock of medications to treat HIV/AIDS related problems. Most families were very poor with no savings. Caring for a chronically sick member of the family, who may have been the bread winner, imposed an added burden. Malnutrition was common.

Between 2014 and 2019, with funding from Comic Relief, the Project achieved the following aims

  • To consolidate the service it had developed over the last 6 years in Bangwe and Limbe, extending provision of care to increasing numbers of patients. The team aimed to support 400 new patients, 5000 old, and make 1700 home visits per year.
  • To assist the District Health Management team to expand home based care to the areas of Blantyre which currently has no service.
  • To become a national resource for the Ministry of Health and other home based palliative care providers, offering advice, advocacy, training and support.

Click here to see our Advocacy Plan - how we persuaded people in the health sector to use our model of home based care in Malawi.

 

Other project work

In addition to the above activity, the project manages the following schemes: 

  • A ‘positive living’ support group for people living with HIV/AIDS.  
  • Training for volunteers, home based care assistants and nurses.  
  • An orphan sponsorship scheme.  
  • Financial support for particularly needy families for food and transport to hospital to collect ARVs. 
  • Research and evaluation of project activities. 
  • Participation on a variety of significant national and local bodies.

For several years the project also supported a local voluntary drama group who performed in different villages every week promoting HIV/AIDS awareness and family planning. Their plays were free and performed in the open with no props or scripts to large audiences and provided a powerful way of getting a message across. While the project’s drama group has now disbanded, many of its members joined a group at the health centre and project staff continue to provide ideas, encouragement and medical input. 

 


Patient support group members making clothes with the project treadle sewing machine and making bead badges to sell

The ‘positive living’ support groups

People living with HIV/AIDS are usually young adults with a family to support. They are often too sick to work or to continue normal daily activities. This project formed two support groups, one in Bangwe and one in Limbe, for people living with HIV/AIDS, where people could meet and share their problems in a confidential setting. The stigma of HIV/AIDS is still great and such support groups can be the start of the process of openness and directly confronting the whole issue. As one of its members said "before I started coming to the meetings I felt lonely and afraid. I can't tell my family I have AIDS - they would turn me out of the house. I can now talk about the problems I am facing with my new friends and we give each other support and encouragement."

The group also offered the chance to become involved in small income generating projects; they shared a community garden and several members made bead badges with the HIV logo on to sell. Micro loans to set up a small business, be it selling dried fish, second hand shoes or charcoal, also helped to get them back on their feet. The project purchased three treadle sewing machines and thirty members were trained as tailors.

The group also provided a forum to learn about 'positive living', which encouraged, among other things, safe sexual practices, prompt treatment of infections such as TB, sound nutrition, use of mosquito nets to prevent malaria, and safe water and sanitation schemes.

 

Patient stories

Read our patient stories to get an idea of how the Home Based Care Project made a difference.

"Imagine being married, giving birth to a baby that dies, contracting TB and HIV/AIDS and then being abandoned, all by the age of eighteen. Such is the plight of a patient we saw recently"
Bangwe nurse

Simon was once seriously ill with Kaposi's sarcoma (cancer) but after anti-retroviral therapy and palliative care from our team his health improved dramatically enabling to get out and about on crutches. He was reunited with his wife and sons who had abandoned him on hearing of his illness.

Doreen was a 20 year old abandoned mum with a very disfiguring malignant tumour on her nose which had infiltrated her mouth and spread throughout her body. She weighed less than 30 kg, and was too weak to fetch water, sweep her tiny house or care for her little boy who was covered in sores from scabies. Apart from pain relief there was little we could offer but we asked our volunteers to visit daily to carry water and help with washing the child and clothing.

Rose - 32 year old with 3 children, all HIV positive. Recurrent episodes of TB and now the possibility of multi drug resistance.

Pius - Born in 1975, HIV positive, wife and daughters ran away due to husband's illness. Home situation very pathetic with no food and poor shelter.

Joyce was a 30 year old widow and mother of 2. She had been in severe pain for months, unable to do anything for herself - even feed herself - and her children had stopped going to school to look after her. We reduced her pain so much that she could feed and wash herself, walk with support and do simple house hold tasks. The children were able to attend school again and she started anti retroviral therapy. We continued to provide care and support until her death.

Alice - born in 1980. Deaf and dumb and HIV positive . Also has a AIDS related cancer since 2012. Communication with nurses is by sign language. She is a challenging case for the team.

Bita - Born in 1934. Cervical cancer since 2009 receiving home based care for 4 years. Oral morphine being administered by nurse Lydia, specialist in palliative care.

Click here for a larger version of this map

About Malawi

Malawi is one of the poorest countries in the world, with 65% of the population living below the poverty line. Literacy rates have recently risen with 81% of men literate and 68% of women. The economy is predominantly agricultural with the majority of people living in rural areas, involved in subsistence farming. A scarcity of good quality soil, land erosion and persistent droughts has resulted in food shortages.

Rapid population growth over the last decade has put pressure on all resources, including health care. Malawi has one of the highest rates of HIV infection in the world; already more than half a million Malawians have died of AIDS. It is estimated that 10% of adults are HIV positive (21% in women attending antenatal clinics in Bangwe and Limbe where our project is located) and an estimated 65,000 children are HIV infected. The average life expectancy for a Malawian is 50 years with child mortality at 140 deaths per 1000 children under 5 years of age, as compared to 5.3 per 1000 in the UK.

There are now about 1.2 million orphans in Malawi, who are often forced into crime or prostitution to support themselves and their younger siblings.

The orphan sponsorship scheme

The number of orphans in Malawi has grown to about 1.2 million. This has led to increased destitution and many orphan headed households. Orphans are often forced into crime or prostitution to support themselves and their younger siblings. 

The Malawi Home Based Care Charitable Trust has supported over 20 orphans over 10 years. To sponsor an orphan it costs between the equivalent of £150 a year and £700 per year to cover three terms worth of school fees or vocational training, uniform, exercise books, pens, exam fees and transport to and from school/college. Extras such as a pair of shoes, food and parafin or candles so that they can study in the evenings are sometimes also provided.

The HIV/AIDS catastrophe in Malawi has left thousands of orphans, child carers, single parent families, street children and child headed households. Children in Malawi are often needed to look after sick parents or younger siblings and when the parents die they are absorbed into the extended family or left destitute. Every family is caring for orphans and every family is struggling to cope. They have to be tough, resilient and resourceful to survive. Education becomes low on the list of priorities. Orphans can take years to complete their primary education due to family demands let alone secondary or tertiary education which only a small percentage manage to achieve.  Education gives them a slightly better chance of getting a job. Given the chance, most orphans are keen to learn and long to go to school or college.

Primary school is free in Malawi but there is no free secondary education. Children who show particular aptitude are selected to fill the limited number of places in government schools where the fees are about £44 a term. They may be sent to one too far from home, necessitating boarding which adds to the cost. Then there are uniform, stationary, exam fees on top of this. If they fail to pay, pass their exams or drop out due to family pressures, they loose their place with no second chance. This means that they have to try elsewhere and the only option is a private school. Fees here are much more. 

Private schools in Malawi can in no way be compared with English private schools.  Often the buildings are run down, equipment such as computers, a library, sports and music facilities and so forth do not exist and accommodation is basic in the extreme - students are expected to bring their own bedding, a bucket for 'bathing' and extra food rations.  But the standard of education is usually better, classes are smaller, staff attendance more reliable and discipline stricter than government schools.

Having completed school, orphans still face an uphill struggle to independence as they have no income.  Sponsors are therefore asked to continue their support through vocational training to give their orphan a better chance of finding work and becoming self supporting.   Currently further training courses that orphans on the Scheme are doing include mechanics, electrical installation, electronics, welding, tailoring, tourism and agriculture.  These courses tend to cost a lot more than school - daily transport to colleges, higher fees and often extra equipment is required.  

We are no longer taking on any new orphans due to to the closing of the College of Medicine Project. However, we are committed to supporting the orphans that were taken on while the Project was in operation, until the time that they are able to be self sufficient. We are grateful for the individuals who continue to support these orphans. f you are particularly interested in this aspect of the project, please get in touch (email kate@malawihbc.org) and we can keep you informed on our current orphans’ progress and let you know how you may be able to help.

 

Secondary school students receiving extra tuition after school through an orphan peer teaching scheme

A brief description of some of our orphans will show how much sponsorship can help.  Sponsorship is a commitment from helping a child through school to the time they can stand on their own and face a more secure future

Nixson  is deaf and dumb. He is a 17 year old orphan living with his older sister, who is HIV positive and often sick, and goes to a special Catholic school where he boards as it's so far away. He is also HIV positive and on antiretroviral therapy. He is small for his age but very cheerful and loves going to school where they cater for his special needs. He is becoming quite an artist. 

Harold and Maureen were orphaned at least 8 years ago and were looked after by their older sister, Thoko along with 4 younger siblings. They have been supported through secondary school.  Maureen is now studying tourism and Harold, who did extremely well in his final school exams, is now studying a BSc in laboratory technolgy at the College of Medicine.  

Maliko is the  17 year old son of a night guard. They are a poor family and Maliko has been blind since birth. He was refused a place at the local village school due to his disability. The nearest and only school for the blind is too far away. Sponsorship has paid for him to board at this special school where he has learnt Braille and his parents can visit once a term. 

Wadson is a 20 year old orphan who is HIV positive and has Karposi sarcoma of his left leg which is an AIDS related cancer. He lives with his extended family. Food is scarce and the pain in his leg was interfering with his schooling. We got the pain under control, we paid for two terms worth of school fee arrears and he was able to return to school and,complete his education  He is now studying a 3 year course in welding and fabrication and doing  well. His health is stable and pain free and he can even play football. 

Margaret is 24 years old and and has eleven siblings. She completed secondary school but failed her final exams. She speaks good English and is highly motivated.  Her life long ambition was to become a mechanic  and with our sponsorship, she has been able to complete a course in mechanics and start up her own business.    

Misheck is 20 years old. His mother died in 1995 and his father in 2004. He lives with his brother.  He is a bright and hard working boy who has done well despite his hardships.  With our support, he completed his secondary school education and in 2011 will complete a 3 year course in electrical installation.  The Sponsorship Scheme will then provide him with £130 to help him set up an electrical shop in Bangwe market. 

Reports

Nurse, Lydia Kasakula, and nurse assistant, Fatima Mlandu, visiting a patient

Contact

For further information, or if you wish to make a donation, please write to:

Kate Handley,
Malawi Home Based Care Charitable Trust,
Lowani, Lyme Road, Axminster, EX13 5BL

Email: kate@malawihbc.org
Tel: 01297 34985

 

UK Charity Registration Number: 1111872

 

Funding

The Malawi Home Based Care Charitable Trust will be funded by Comic Relief for the next 5 years (July 2014 - June 2019). We are extremely grateful for this support.