http://drakensteinhospice.org.za
Butterfly House has been completed in an informal settlement, Fairyland, a suburb of Paarl. Paarl is situated in the Winelands of the Western Cape and within the Drakenstein Health District, District 2 of the Westcoast-Winelands area. The district has about 200,000 people in a rural and peri-rural area and includes 2 larger and 3 smaller towns and the surrounding farming districts.
Drakenstein Palliative Hospice was established as Paarl Hospice in 1991, but changed its name in 2003 to more accurately reflect the area which we serve. The mission of Drakenstein Hospice is to respond to the physical, emotional, social and spiritual needs of persons living with a life-threatening illness within Westcoast-Winelands Health District II, through the provision of sustainable palliative home based care and education.
Drakenstein Palliative Hospice is a member of the Hospice Palliative Care Association of South Africa (HPCA) and has been accredited by COHSASA (Council of Hospital Services Accreditation of Southern Africa) until September 2011 thereby aiming to be a beacon of palliative care excellence within the area and South Africa. To this end we are actively involved with palliative care training of volunteers, DoH (Department of Health) professional staff, Community Based Nurses and Hospice staff. We have been part of the curriculum writing of the palliative Home Based Care Course, the palliative bereavement and the palliative psychosocial and spiritual training courses to be used nationally.
In February 2005 Drakenstein Hospice adult patients started taking ARV’s and six months later children were given treatment. This had a dramatic effect on the management of Aids patients, many lessons had to be learned and in the process mistakes were made. Mothers and children were often separated because of our focus being on survival at all costs without sufficient consideration for the effects and implications on the family and the community. As a result, in July 2005 the first meeting was held to look at appropriate ways of dealing with the on-going need to look after orphans and vulnerable children within the Drakenstein Health District.
Drakenstein Hospice cares for an average of 295 patients with a life-threatening illness in their homes per month within the Drakenstein Health district; 134 having Aids and 54 of these being children. In addition we care for nearly 150 potential orphans and vulnerable children, the children of our adult patients.
Palliative care, according to the WHO definition (2003); Aims to improve the quality of life of patients and their families through the prevention & relief of suffering & the early identification, impeccable assessment & treatment of pain & other problems, physical, psychosocial & spiritual. The first part of the definition, ‘aims to improve the quality of life of patients and their families’ is the area of concern that prompted the development of the Butterfly House concept.
The mission of Butterfly House is to co-create and manage a palliative community resource of mutual care and support, which focuses on ‘living’ with HIV/Aids.
The vision is to provide quality holistic care; in the community, for the community, with the community.
The creation of Butterfly House has been a steep learning curve and a wondrous exploration into the value of networking, being community appropriate, responsive and gaining support and recognition for our paediatric palliative care programme.
2. PROJECT PARTNERSHIPS
Butterfly House came about as a reaction to need for the management of on-going palliative care support for adults and children who were dealing with the complexities of ‘living’, and having something to live for and not die, from Aids.
Recognising that the need is too great ‘to do’ alone and that service delivery needs to be community orientated and appropriate, a priority in the establishment of Butterfly House has been community support and involvement. To this aim Paarl Round Table, community members, interested parties, Monte Christo Ministeries, HPCA and a Norwegian Family Counselling Agency in Trondheim and Ivar Koteng from Norway have been involved with support, planning and funding.
Paarl Round Table have contributed expertise in legal, financial, architectural, management and co-ordination functions.
The Norwegian Family Counselling Agency in Trondheim have provided funding and have provided an initiative to support the building of Butterfly House.
Ivar Koteng has brought great enthusiasm, resources and support as well as 'hands-on' active building support by the Norwegian community
Monte Christo Ministries have supplied project management expertise and financial support for operations.
HPCA provides support around palliative care, policies, procedures, accreditation and identified the project as a pilot programme in the management of orphans and vulnerable children homecare model.
The Community support the project through ensuring safety, labour for building, identifying and keeping us focussing on real community needs, job creation and funding. In addition a vital role of community members is to act as cultural consultants.
Butterfly House is part of the operational function of Drakenstein Palliative Hospice who initiated the project, provided the motivation, on-going administrative and financial support, palliative care expertise and documentation. Butterfly House will provide the ‘no end to caring’ part of patient care as part of the HPCA vision. Drakenstein Hospice is in partnership with the Department of Health as part of the Home Based Care European Union supported programme.
Other interested parties have supplied accounting services, public relations, referral support, sharing of ideas and pitfalls, funding, engineering support etc.
We are investigating; together with Isibindi, the training of youth and childcare workers in conjunction with a Department of Social development programme. It is our vision that a palliative community nurse and a trained youth and childcare worker would work together as a team to support the families in their homes and supervise children in ‘safe parks’.
3. INNOVATION
The project is based on the ideas of NOAH and their Ark programme looking after orphans and vulnerable children. As with Ark, Butterfly House is a Resource Centre and our ‘Butterfly Wings’ replaces Arks. The difference between the two programmes is the emphasis on a palliative care approach and supervision. Therefore, a teacher and social worker/occupational therapist will support the ‘Wings’ and will be involved with training foster care mothers as part of the youth and childcare training programme.
Care for the community, in the community, with the community remains the focus. This idea is supported by the concept of transdisciplinarity which recognises that sustainability of a programme needs to include the disciplines of the multidisciplinary team but also community members.
Based on the HPCA vision of no end to caring and together with other organisations in the community (we have established a Drakenstein Service Forum) we have recognised that care needs to be holistic and on-going, this project ensures on-going care for adults and children.
Butterfly House is envisaged as a resource centre, which could be available for a variety of community projects in the future. It is a place of safety and expertise, which could act as the launch pad for meeting community needs.
Butterfly House is a community project, in service of the community. Networking through the service forum has been invaluable.
4. POVERTY IMPACT
The adult community needs identified are on-going ARV monitoring and support, continued social and community support, access to social workers and contact with others affected by HIV. Other aspects are job
creation and employment opportunities, tools needed to sustain employment and support and care for children.
The children’s needs are to keep and support children within their own family, community and culture, to cater for basic physical and medical care, provide structure, ensure good nutrition, cognitive and physical stimulation.
We currently employ and have trained 18 palliative home based care workers who look after an average of 295 patients per month in their homes under the supervision of 5 palliatively trained professional nurses and 3 social workers. The aim is to train 30 Youth and Childcare workers in 2008 for Monte Christo Ministeries, Norsa, Catholic Caring Network and Butterfly House.
Currently we are involved with identification and care of patients in need and the distribution of food parcels. We provide day care activities, accessing of grants, bereavement support and other counselling services. We also trained palliative community nurses in a job creation initiative and are planning to train youth and childcare workers in the future.
5. PROJECT EFFECTIVENESS
To meet the needs of Drakenstein Palliative Hospice and the community Butterfly House aims to
To provide and equip a physical space in the community through the establishment of a resource centre.
To develop a committed transdisciplinary team of palliative care expertise and community members to ensure on-going palliative care excellence, community support, cultural sensitivity and appropriateness.
To identify, develop and provide resources for adults and children infected and affected by HIV/Aids. Currently we have 134 Aids patients and 54 of these are children and nearly 150 potential orphans and vulnerable children (children of out patients) who will directly benefit from the project and for whom the project has been initiated.
To document the vision and process of establishing Butterfly House with the aim of duplicating the project and sharing information and expertise.
The current target groups are:
The children who are Drakenstein Palliative Hospice (DPH) patients and children of DPH patients.
Primary care-givers or patients of DPH infected or affected with HIV/Aids
DPH patients who can benefit from the programmes presented.
These target groups may change and new or different needs in the community are identified.
The challenges have been
The demands on Hospice have been constantly increasing as the DoH is decreasing in-patient time, TB has been added to the workload as it is now a life-threatening illness and new innovative ways needed to be established to look after the growing numbers of children in our care.
Together with lack of time we experience a shortage of manpower. Being an NGO the resources are not available for extra staff and nursing staff is in great demand. HPCA has identified the project as a pilot site and have appointed a project co-ordinator and will assist with funding. Monte Christo Ministries has agreed to assist with operation costs.
The initial phase planned:
A pre-school day-care centre for children who are infected and affected by HIV/AIDS and a day-care for Drakenstein Hospice adult patients in the initial phase.
6. FINANCIAL MANAGEMENT
DPH is a member of HPCA and is COHSASA accredited until September 2011.
Butterfly House is part of the DPH operations and is managed as a sub-committee which is chaired by the Butterfly House Manager (Fiona Brophy) and reports to MANCO of DPH, which is chaired by the CEO of DPH. The CEO reports directly to the DPH Board of Directors.
- The financial management of Butterfly House is supported as part of the DPH financial management system.
Monthly financial reports are presented to the DPH Board of Directors.
PriceWaterhouseCoopers, are currently acting as DPH auditors. DPH is audited every year.
7. SUSTAINABILITY
The holistic care of people living with HIV/Aids and orphans and vulnerable children is an issue that confronts all working in the field. Local and national government as well as the international community have recognised this.
The Norwegian Family Counselling Agency in Trondheim, Paarl Round Table, Ivar Koteng, Monte Christo Ministries, HPCA and DPH staff are committed to finding a way of managing and supporting people with HIV/Aids.
As part of the 2010 Health care plan, community based care is a key feature and both the Department of Health with Community Based nurses and the Department of Social Development with the Youth and Childcare worker programmes support this vision.
Quality palliative care requires on-going care and support for adults and children and there is worldwide recognition and support of this vision.
Community involvement will ensure that the project remains in touch with community needs, will ensure protection of the building and remaining in touch with the needs of the community. Being appropriate with care practice is the best way to ensure financial sustainability.
Networking initiatives will introduce innovative ways of working and financial sustainability.
Networking is the key to the long-term vision. The Drakenstein Health District has an in-patient unit HIV infected children, Bowy House. DPH provides Home Based Care. The vision is therefore to work together. If the children are very sick they would be in Bowy House. As they get better they could attend pre-school at Butterfly House during the day. A foster care support programme (Butterfly Wings) would be identified. As they children become more independent they would attend the ‘normal’ pre-school next to Butterfly House and would be cared for by the Butterfly Wing programme. This would provide support for he parents and grannies and ensure that there is continuity of care even when the parents have died.
After the establishment of the day care for preschool children and adult support groups, job creation programs, an after school care-centre and the establishment of ‘Safe Parks’ and “Butterfly Wings”. Butterfly Wings will be legal community foster care houses where orphans & vulnerable children are cared for by a foster care mother and supervised by a social worker, teacher and or Occupational therapist. The vision is to train youth and child Care workers as part of the Isibinidi vision to look after children in the community and create a safe park next to Butterfly House.
8. REPLICATION
Part of the vision of Butterfly House is the replication of the project. This is seen as a pilot programme and both HPCA and Round Table would be interested in the replication of the project. To that aim we are documenting the process and writing the policies and procedures.
We believe that we will be able to assist other organisations to establish effective, accountable programmes based on the needs of HIV positive patients.
9. PROJECT SUMMARY
Butterfly House has developed out of DPH's attempt to find a community appropriate response to caring holistically for both adults and children infected and affected with HIV/Aids in the community. The mission of DPH is to respond to the physical, emotional, social and spiritual needs of persons living with a life-threatening illness within Westcoast-Winelands Health District II, through the provision of sustainable palliative home based care and education.
The mission of Butterfly House is therefore to co-create and manage a palliative community resource of mutual care and support, which focuses on ‘living’ with HIV/Aids. The vision is to provide quality holistic care; in the community, for the community, with the community. The creation of Butterfly House has been a steep learning curve and a wondrous exploration into the value of networking, being community appropriate and developing, gaining support and recognition for our paediatric palliative care programme.
To meet the needs of DPH and the community, Butterfly House aims to provide and equip a physical space (a resource centre) and to develop a committed transdisciplinary team of palliative care expertise and community members to ensure on-going palliative care excellence and community support in a culturally sensitivity and appropriate manner. We aim to identify, develop and provide resources for adults and children infected and affected by HIV/Aids which is family centred. Documentation of the vision and process of establishing Butterfly House with the aim of duplicating the project and sharing information and expertise is high on the list of priorities.
Being a COHSASA accredited HPCA Hospice provides the expertise,
legitimacy and on-going sustainability for the project. ‘It takes a village
to raise and child’, but a community (local and global) to care. The
need is too great to be ‘doing hope' alone.
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