The international Christian NGO, Beautiful Gate Ministries aims to provide a range of services for disadvantaged children that includes hospice care for babies. The organisation states:
The care centre for abandoned and HIV/Aids-affected children in Maseru, Lesotho, opened its doors in 2001 to provide care for abandoned or orphaned babies around Maseru. Initially we started out as Little Feet Ministry, but later joined forces with Beautiful Gate Ministries.
As of November 2002, we have cared for a total of 46 babies, facilitated ten adoptions, 3 infoster-care pending adoption, returned 7 babies to families and 4 have passed away from HIV/AIDS related illnesses. Currently we have 25 babies in our care, five of whom are HIV+. We work closely with hospitals in the area and the police, who often discover abandoned children, as well as the departments of Social Welfare and Health. We also have the support of the Director of Social Welfare in Lesotho.
Beautiful Gate, Lesotho has two programmes: residential and hospice care, and an outreach programme. Through these programmes, we aim to:
- provide loving care for abandoned and HIV+/Aids babies between 0 - 5 years of age
- give loving, dignified hospice care for those babies who are not placed with families, and who require specialised medical treatment
- train and support our staff and the community in practical care-giving to HIV+/Aids and abandoned children
- establish a foster-care/adoption programme in the community for abandoned and HIV+ children through networking with other organisations in Lesotho
- provide biblical counselling for those in the community (especially children) affected by or infected with HIV/Aids.2
In Lesotho, HIV/AIDS has been the impetus for a perceived need for palliative care. A draft US Government Rapid Appraisal for HIV/AIDS Program Expansion in Lesotho3 (Rapid Appraisal) identifies palliative care as a critical important component of an integrated health plan to combat the effects of HIV/AIDS in the country. However palliative care is in reality, not at all developed.
Clinical and medical comprehensive palliative care and palliative care for children are nearly non-existent. Given the lack of progress in palliative care, service delivery in this regard primarily consists of fragmented social, spiritual and psychological support (with limited bereavement support)4
The National AIDS Strategic Plan 2002/2003-2004/2005 makes no reference to palliative care and there are no palliative care policies or guidelines for pain control and these have not been integrated into general health policies for dealing with cancer and other illnesses. Advocacy for palliative care is minimal and it appears only on a limited basis in the nurses’ training curriculum.
Suggestions for development in palliative care are highlighted in the short term recommendations offered by the Rapid Appraisal.5
Palliative Care and Home and Community Based Care (HCBC):
- In collaboration with the US Office of the Global AIDS Coordinator (OGAC) and the African Palliative Care Association (APCA), conduct a palliative care assessment as a first step in mobilizing the national response for palliative care.
- Provide technical assistance to form a National Palliative Care Association.
- Assist with a national participatory mapping and rapid assessment exercise to identify current HCBC coverage and efforts, levels of HCBC being provided, gaps (geographic and provision of services), and to review the effectiveness of HCBC.
- Support training at the district and community levels in key technical areas: palliative care, children with HIV, psychological and emotional support, dealing with mental health issues, orphans and vulnerable children, communication skills, etc.
Family Health International (FHI) defines home and community based care (HCBC) as “the provision of care and support that endeavours to meet the nursing and psychosocial needs of persons with chronic illnesses and their family members in their home environment”6. While HCBC delivers patient care in the home environment, palliative care is an approach that attends to the needs of patients and families affected by a life threatening illness in a variety of settings including the home, hospice, hospital, clinic and community.
A strong sense of community may be Lesotho’s greatest strength in embracing palliative care to cope with the AIDS pandemic. Caring for others in the community is a traditional value. Community-based prevention and care activities, including peer education are characteristics of the country’s response to HIV/AIDS. Training in home based care has been provided to 6,000 community health workers. Home based care and support groups for people living with HIV/AIDS and other illnesses are traditionally rooted and have been a spontaneous response to the health crisis. These include burial societies, traditional savings groups and womens’ church groups who visit households with ill family members. The Rapid Appraisal recommends that these community based initiatives be capitalised upon but notes that there is no coordinating body or strategy to standardise or monitor HCBC provision. National training manuals provide some guidance but are limited in scope. Home and community based care workers in Lesotho described their work to the Rapid Appraisal team as:7
Activity |
Description |
Respite care e.g., house keeping and washing of clothes, blankets and linen. |
This is often done on a daily basis for bedridden clients who are living on their own. For clients with other household members it is done approximately on an as needed basis. |
Cooking |
Daily basis for bedridden clients if food is available, as needed for those with other household members |
Bathing client |
Daily basis for bedridden clients who are living alone and as needed for those with other members in household |
General assessment |
Per visit but there is no checklist, monitoring tool for clients or guide for consistency. |
Monitoring of medication |
Inconsistent observation for clients on medication –HCBC workers not trained in any aspect of medication use. |
Provision of panado, paracetamol, nystatin |
As needed per opinion of client and HCBC worker. Panado and Paracetamol are given for just about any symptom. Use of Nystatin not clearly articulated. |
Counselling and prayer |
Much of the support is in the area of counselling and prayer.
Clients as well as HCBC workers often belong to different churches. An interdenominational approach is most commonly used. |
Referrals primarily to clinic and other care and support services |
As needed, yet no clear guidelines or resource guide. Clinic relationships vary according to staff. HCBC workers reportedly try to accompany client to clinic and at times will use own money to pay for the visit and/or medications |
Provision of traditional remedies |
Basotho commonly uses traditional remedies. The most often cited is Soso a drink made from boiling a mixture of peach tree branch, pine tree bark, grape leaf, African potato (moli), algae (bolele), aloe (moriri oa matlpa) and mofifi8 which is sipped throughout the day. Soso is believed to clean ones blood, provide strength, and to help with ulcers but is not believed to cure AIDS or other illnesses. Other types of traditional remedies were also cited. |
Pain management |
No access to pain medication or systematic way of assessing/managing pain. Heavy reliance on Panado and Paracetamol without clear understanding of the difference. |
Material support |
HCBC workers provide as much as they can from their own homes. Some HCBC groups have started their own gardens to provide fresh vegetables to clients and a few are starting IGA activities with the hope of raising money to support clients. |
Nutritional support |
Donations from HCBC workers. Inconsistent and loosely targeted food assistance from WFP and UNICEF. Monitoring of food intake – including asking client what they will eat that day and checking in the home to see if the food is there. |
Some plans have been developed for the creation of the Tsepong Community Hospice, to serve the areas of Tebellong, Qabane, Linakeng and Thabana-Tsooana. The objectives of the project are: to alleviate the effects of the HIV/AIDS crisis; to facilitate the development of a culture of community, to involve home-based care, to develop an effective network of stakeholders such as churches, traditional healers and medical centres.9 This initiative is being promoted by Sister Virginia Moorosi of the the Machaberg Hospital at Qacha’s nek and would seek to raise funds through agricultural and horticultural projects. A needs assessment for HIV/AIDS was conducted in the district in 2003.10 The report states that the hospice committee involves a large number of local people from several villages as well as a number of key individuals in the District of Qacha. A field has been donated for a building plot; rocks have been gathered and some fruit trees planted; there is potential for further land to be used for agricultural purposes. The vision in the community is to build a facility for respite care, and to offer training courses to the long-term sick. But plans for the building will require significant capital investment beyond those available in the district.
Sister Moorosi describes the situation:
‘I’m a social worker, so my work is to see the welfare of people, to see that people are having the higher standard of living, understanding how they can be infected or affected by HIV and AIDS and other terminal diseases, so while I was doing the research going on making the assemblies in the societies, I realised that there was a need to build a hospice where people can get counselling, where people, when they are neglected by their families, maybe two to three days they can come to the hospice to get counselling, even to get moral support, spiritual support, counselling, and other things, maybe washing, this can maybe raise their spirits up and go back to their families … After the research I got 3,000 orphans in that place, it’s where I was thinking that I can build a hospice for alleviation of those people living there, to give them education and to see how they can come to a better knowledge of how to understand how to take care of themselves, even these affected orphans. Up to now I have made a training of support groups, these are volunteers, people in the villages, and I did ask the government but the government also it’s helping very little by supporting as well the workshops, to support the sick people and to those orphans by distributing the kits, and the paracetamols and small medicines to take care of the sick people … Because out of the research I made I have realised that many are dying alone in their families because of the neglect they get, because of the poverty, they don’t get food nutrition and their cleanliness hygienically, they are not given by the carers because financially people in Lesotho are very poor and many are not working so they cannot tolerate with the sick people for a long time’.
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