How is the work you are doing helping patients living with HIV/AIDS get to "zero" pain (physical, emotional, social and spiritual)?

This was the question posed to 15 grassroot palliative care and hospice organisations throughout Africa, funded by The True Colors Trust small grants programme. APCA appreciates the efforts of each of these organisations in sharing these stories, highlighting their work and the difference it makes in benefitting HIV/AIDS patients in their communities.

Representing palliative care initiatives in 10 countries, listed alphabetically, these inspirational stories reflect the human face behind the way palliative care touches the lives of people living with HIV/AIDS across Africa, helping them get to "zero" pain, holistically.

A journey starts with a single step: Comfort and healing
Pabalelong Hospice, Botswana

Pain is something that shatters one into pieces and it can unsettle the core of one's being.

At Pabalelong Hospice we have heard such cries of pain. Some of our patients saying:

"I have become untouchable due to AIDS;"
"God also will refuse me entry into heaven since I am infected" "My body pains 24 hours a day;"
"No one touches me without gloves;"
"My family has thrown me out of my house due to my positive status;"
"My colleagues are afraid to come near me or to shake hands."

Such cries of physical, mental, social, emotional and spiritual pains are intense and need healing. With the support of APCA, in many ways the staff at Pabalelong hospice has reached out to those in pain and tried to give them comfort, care and healing.

Below are the ways that we have reached out in love and compassion:

• Visiting families as often as needed to give support and to ensure confidence
• Educate the family about the illness, treatment and the care needed
• Offer counseling at all levels to help families cope with pain and losses
• Treating the patient with dignity and respect
• Effective pain management with medication
• Spiritual care is offered by a priest and is available at all times for the patient and the family
• Psychosocial support offered by a well trained and experienced social worker
• The patients gathered daily in support groups which enable them to share their pains
• Death and bereavement counseling is offered to the family in times of loss
• Most of the patients who have experienced hunger pains for want of food have been provided with adequate food and nutrition.

Pabalelong administrative staffs work in two villages with the school aged children to give awareness about HIV/AIDS. These children are offered counseling to cope with the pains and losses in life.

In collaboration with African Hospice Care Association, efforts are made to take hospice care to home based care so that all the patients who are at home will also receive effective pain management by our tender loving care.

Through all these efforts we hope to achieve Zero new infection, Zero discrimination and Zero AIDS related deaths in the near future. A journey of a thousand miles begins with a single step so we make this journey to ZERO PAIN trusting in the providence of God.

Restoring dignity to a bed-ridden patient
Chogoria Palliative Care Unit, Kenya

Miss A, is a single lady in her 40s who lives alone.  She was first enrolled into palliative care in 2000 and could not afford ARTS.  She later benefited from PEPFAR funding for ARTS (2004) and lives in a single small cube that she has rented.

Her mother who is married to a man who is not A's father heard the cries of a woman who's life had reduced to a state of complete dependency, relying on others to bathe, cook, even collect her ARV drugs.

Both the community health worker and patient's mother reported A's case to a palliative care office. The palliative care team provided gloves and disinfectant as the mother requested and also taught her how to use them for protection against infection.

A nurse was then sent to assess the patient at home and she confirmed the case of A was as reported. She found hard food that A could not be able to feed on.  At the time of the nurse's visit, A lay on the ground, in total pain and desperation. The soiled linen was next to her and flies were all around. She could not even move herself and lay there ninety nine percent of the time, until when her mother would show up to bring her food, clean her and leave her alone. The nurse gave nutritional support and promised the team would help her live a dignified life.  

Initially the team did two weekly visits, controlled the pain, provided a covered mattress, a wheelchair and prayed with her. Today the team visits her monthly and the patient is happier, lifts herself to the wheelchair and says soon she will walk and leave the wheelchair. 

Improve patient care through training to health professionals
Palliative Care Association of Malawi, Malawi

In 2010, PACAM was awarded a small grant from APCA starting on 1st June 2010 to 31st March 2011. The aim of the grant was to train medical doctors in opioids use in pain management also palliative care advocacy.

With this grant PACAM has trained 21 doctors, 29 clinical officers and 11 nurses. These trained health professionals are all working in various hospitals in Malawi. They were equipped with knowledge, attitudes and skills in palliative care. They learnt holistic pain assessment and management using opioids.

Considering that most patients admitted in the hospital are due to HIV/AIDS related conditions and pain is the common symptom in HIV therefore, these health professionals are providing the care that will relieve their pain.

Providing a human touch to holistic care
Catholic AIDS Action (CAA), Namibia

Jacky from Catholic AIDS Action notes that despite the shortage of resources for home-based care services, clients have expressed satisfaction and appreciation for the work.

Using a holistic approach during her home visits, Jacky visits her clients on a monthly basis, taking the time to sit and talk to them, hold their hands, and then assess whether their needs are physical, emotional, social or spiritual.  Most importantly, Jacky always considers her client's cultural beliefs, values and norms and is very sensitive toward any issues of discrimination against them. Follow-up is a high value for her service provision, to check on the client's progress and seek alternative solutions.

"This puts hopes in the patients lives knowing that out there, there is someone who will come to their aid not giving money or food, but only to elevate the ill health, suffering and pain," Jacky said.  

Finally, Jacky believes in being available to clients 24 hours a day to her clients, especially to the youth who have been infected with HIV/AIDS, with her phone number always accessible to them.

When a client is financially poor, Jacky arranges for the necessary medical staff to see the client at their home, particularly for bedridden patients at their houses.   

"I always advocate for my patients.  If my client needs attention, I will go there myself and talk to the right person my client needs in order to be assisted in the right way like any other free Namibian," she says.

Home-based palliative care lifts a client's spirits
Catholic AIDS Action, Namibia

When a 47 year-old client who has received home-based palliative care since 2009 was diagnosed with retro viral infections and pulmonary TB, her spirits were low.

In critical condition, bedridden and very weak, whilst struggling for her life, the woman was highly concerned about the welfare of her 17 year-old daughter.

When Catholic AIDS Action (CAA) volunteers started visiting her regularly, along with a palliative care nurse her countenance changed.
Family members who had previously found it very difficult to handle the patient were encouraged by the assistance of the volunteers. Members of her church were also encouraged to visit the patient through CAA's volunteers.

Veronica's health turn a turn and she improved significantly. Family members provided the support recommended by CAA until she regained her strength and returned to her daily activities.

"Her sadness turned to happiness," said Hilde K Neromba, a CAA palliative care nurse

Caring for the psychosocial well-being of HIV positive children and their parents.
The Centre for Palliative Care, Nigeria

A major aspect of care provided to HIV positive patients by The Centre for Palliative Care, is pain management and symptom control.  

One of the ways the Centre for Palliative Care does so is by catering to the psychosocial needs of persons living with HIV. Counseling is provided to children and parents or caregivers of infected children. During monthly day care fora, interactive sessions of health education are held for parents.

Occasionally, indigent families are given some financial support.  Additional activities are organized for the children in the Palliative Day Care Centre.  Activities include indoor and outdoor games.

Educational support is an important aspect of care provided by our organisation.

We provide books, writing materials and academic exercises are coordinated trained teachers. These learning activities are carried out during the day care sessions and also during hospital admissions. This is helpful since some HIV positive children tend to spend long periods of time in hospital admission, thereby missing school.   These activities have been helpful in improving the quality of life of children living with HIV.

Bringing hope through home-based care.
Rwanda Hospice Palliative Care Center, Rwanda

Rwanda Hospice Palliative Care Center is committed to ensuring that patients living with HIV/AIDS, cancer, and other life limiting illnesses and their family's access free quality, comprehensive palliative care services that respond to their needs and rights. We believe that there is always something that can be done to improve the quality of life of our patients.

Charrotte is one of the hospice center's very first patients. She is a 38-year old woman that is living with HIV and cervical cancer. In addition to constant pain and discomfort, Charrotte faces a range of 'pains' as a single mother of a young child living in poverty. To help her reach 'zero' physical pain, RHPCC has been working with Charrotte to identify and alleviate her physical, emotional, social, and spiritual pains.

We manage her physical pain with continuous medical care, including providing free drugs and medical supplies to manage her daily pain and symptoms. We are working to address her social needs by providing her with food and other basic items, as well as financial support for housing (two years' rent paid), transportation, and schooling for her daughter.

Last, but not least, the hospice centre supports Charrotte in addressing her emotional and spiritual needs through counseling, prayer, and by building links with her church and community. Together, these different areas of support contribute to ensuring that Charrotte is able to live free of pain – physically, emotionally, socially, and spiritually.  

Walking a child through grief and transition.
BigShoes Foundation, South Africa

Thandi* is a nine-year-old girl living with HIV in South Africa. Diagnosed with TB Meningitis, she also had acute spinal and abdominal pain while admitted into hospital for symptom management.  

Within three months of her admittance to hospital, the paediatric palliative care hospital team helped Thandi with holistic pain management as she grieved the recent loss of her mother. Upon discharge from the hospital, Thandi received continual support as she transitioned to live with her father who had no knowledge of her illness until she came to live with him. Thandi had to also adjust to a new living situation in a new city – Johannesburg.

Physically, Thandi received assistance in pain management that ensured relief from her spinal pain and diagnosis of her abdominal pain as poor gut motility. Her nutritional needs were also managed through the paediatric hospice ward.

When the team first met Thandi in the hospital, her pain was rated at 8/10. However, during her most recent home visit, the paediatric palliative care team found Thandi at home, settling into her new environment, physically comfortable, eating well, and happy to be with her father. Her pain level was rated at 0/10 -- a notable outcome as a result at the paediatric palliative care team's assistance in enabling her to transition to her new home.

*Thandi's name has been altered to protect her privacy.  

Helping a 52-year old patient re-unite with his family.
Baphumelele Respite Centre, South Africa

Mr. Z. was a 52-year-old HIV positive man who was found by the Hospice Team due to a tip-off by one of his neighbours.

He lived in a very run down shack near one of the clinics, was on ARV's already and had just started TB treatment for the second time. He lived by himself, with no one to properly look after him. Sometimes the neighbour would cook for him. His shack was very run down and during the recent rains all of his possessions had become wet due to leakage from the roof and the walls. Carers referred him to the Respite Centre for support; at least he would have a dry and warm bed there, food and company as well as help with his medication.

While he was there, attempts were made to locate his family because he had really no idea about the location of any relatives. With the help of the police, it was finally established that he did have a brother in a certain place in the Eastern Cape.

Again, with the police's help, contact was established with the brother and his family and it was decided (with both their consent) that Mr. Z. would be re-united with his brother. Coach tickets were bought and one weekend Mr. Z. was escorted by one of the carers back to the village of his birth and the home of his brother's family.

According to the accompanying carer, the scenes of re-unification were very moving; the family treated him like a long lost brother and uncle, a proper room had been prepared for him to call his own and the family was overjoyed to welcome him back in their midst. He was open with them about his HIV positive status and they seem to be accepting of this fact.

There was a clinic in the village so he would be able to receive medication and support from them. Due to the intervention of the Hospice in the home team and the respite centre this man went from lonely despair with an uncertain future to being part of a family and a hopeful future.

This is just one of the examples of care from Baphumelele Respite Care and Home Based Care and illustrates the relieving of pain for this man in a physical sense but also in an emotional and social sense as well as spiritual.

Baphumelele Respite Centre, together with its Home Based Care, is continuing to be beneficial to the people in the community of Khayelitsha (near Cape Town) who live with HIV/Aids and TB.

Restoring a child's dignity and health.
Golden Gateway Hospice, South Africa

This is the story of a 6 year-old child that was suffering from severe malnutrition and stage 4 of HIV. When she came to our hospice on her grandmother's back, she was wearing nappies because of the severe diarrhoea. She apathetically didn't want to eat or drink anything, she just cried. I took her to the local hospital where she was admitted and was found to be suffering from severe dehydration and malnutrition. She had been diagnosed as HIV+ at birth but was only started on ART a few weeks before she came to see me.

The child is cared for by her grandparents and there are three other children staying in the shack with them. As the grandparents do not work, they live in extreme poverty. I visited her in hospital every day, some days I thought that she would not make it through to the next day.

When she was discharged she was still very weak. The professional nurse and social worker went to the shack and did a full medical/ psychosocial assessment there.

A care plan was drawn up with the planning of her care. The picture of her smile says more than words what holistic palliative care can do for our patients with proper care.

What has Hospice Africa done to help AIDS reach holistic score of zero?
Hospice Africa Uganda, Uganda

Working with support and other organisations, we have given consistent care to patients in clinical stage 4. Sick patients, are supported with treatment for infections, cancers alongside pain and symptom control. The psychosocial, cultural and spiritual issues of patient and family are addressed, making it possible for our patient to "live until you die".  

Based on our vast experience, we are training those in HIV support care throughout Uganda so that they too can give palliative care to those in need, using affordable and available medications suitable for the patient to live and die at home. The new Institute of Palliative Medicine for Africa, is now training specialists in palliative medicine with degrees and diplomas. It is through those we train that more in need will receive such care.

In 2011, a network of affordable palliative care is now available to all in Uganda through those trained at HAU and supported by the Palliative Care Association of Uganda (PCAU)

Providing emotional, spiritual and social pain management
Our Lady`s Hospice, Zambia

Our Lady`s Hospice, established in 2003, strives to provide and promote quality palliative care through a holistic approach to care through a holistic approach to care (physical, Psychological Social and spiritual) in the following ways:

Physical pain management: The hospice provides pain relief for patients based on the stage of their disease. In addition, an established physiotherapy department works to rehabilitate patients from various disabilities such as stroke, backaches, arthritis, sprains, paralysis, fractures, peripheral neuropathy, etc. This treatment is given in the form of exercises, ultrasound, hot packs, reflexology, and cold and ice therapy.

Social pain management: The hospice's enrollment personnel ensure that a client identifies a support person. The proposed person is to provide adherence counseling for medication, then acceptance in the family and finally the community. The support person for the client is taught about the medication their client is taking and how to help the client to comply with medication and how to provide the necessary support the clients requires. This has lessened cases of stigma, which in most cases is a source of pain. Family conferences or workshops are held as well depending on the client's compliance.

Spiritual care - chaplains who are Catholic priests as well as sisters frequent the hospice. The priest's visit the patients daily to pray for them and, provide them with spiritual literature.  The hospice is open to chaplains of all denominations at any time the patient may like to meet them.  

Providing access to ART Education and nutritious food
Dananai Child Care, Zimbabwe

Dananai Child Care, ZimbabweSeveral causes of pain have been identified in the community where Dananai Child Care operate:

1.    Lack of nutritious food to allow board building
2.    Long distances to the local clinics to take drugs and adherence
3.    Late diagnosis and treatment
4.    Stigma and lack of care
5.    Non-participation of influential leaders.

One of the ways the organisation is meeting these needs is through the establishment of community gardens. These gardens have been initiated and supported for the purpose of improving nutrition and food among family members of people living with HIV/AIDS. Such initiatives have improved drug adherence and overall health for those living with HIV/AIDS.

Comprehensive services for TB and HIV clients

Zambia Tuberculosis and Leprosy Trust (ZATULET), Zambia

The work we are doing has helped patients living with HIV/AIDS get to zero pain (physical, emotional, social and spiritual).  This has been done in 3 ways.  

The first has been to sensitise our TB patients to have an HIV test since there is a 70% possibility of having a co-infection in Zambia.  This was done through the diagnostic counseling and testing (DCT) process, which also applied to HIV clients who were also encouraged to have a TB test.  

The HIV infection diagnosis was done at our community clinic through our voluntary counseling and testing programme also for those who wanted to know their HIV status.

The third one has been to get an antiretroviral treatment (ART) license from the Medical Council of Zambia to start giving ARVs to our clients within the same facility according to our clients' wishes.  We started the ART clinic in August 2010.

Emotionally, physically and socially they were supported by our adherence counselors and support groups.  In addition, the churches the clients attend pray and support them spiritually.

With early diagnosis and treatment, many clients are no longer bed ridden and opportunistic infections have been reduced because their immune systems have been improved.  Clients who had CD4 counts of less than 50 improved, and now some have CD4 counts of between 450 and 500. Many are now leading normal, productive lives with no pain.

* Photos have been provided by the organisations interviewed, with their consent to have these images published on the APCA website.