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• Introduction: Comprehensive care across a continuumComprehensive care involves a network of resources and services which provide holistic, comprehensive, wide ranging support for people living with HIV/AIDS (PLHA) and their families. A continuum of care includes care between hospital and home over the course of the illness. There are many issues that need to be addressed before continuous can be provided. There need to be adequate resources (financial, supplies, services, staff, volunteers, government and community support), and connections between them. Care must incorporate clinical management, direct patient care, education, prevention, counselling, palliative care and social support.
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· Home
care is care given to sick people in their
homes. This might include people caring for themselves, or care
given by family, friends, neighbours, health and social service
workers and others. Such care can be physical, psychosocial, spiritual
and palliative. |
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· District hospital care is given to sick people by doctors, nurses, counsellors, social workers, education services, legal aid.
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Human resources |
Health facility-based care | Community care |
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| Doctor |
XXXX
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X
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| Nurses |
XXXX
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XX
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| Counselors/Social workers |
XX
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XX
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| Traditional practitioners / community workers |
X
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XXX
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| Families |
X
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XXXX
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• Basic principles in
a continuum of care
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• Integrating HIV prevention and care
It is important
to combine care with education and prevention strategies. Listening
to and learning from the affected person/family is a vital component
of care (Fact Sheet 7). Counselling services, sexually transmitted
disease (STD) clinics, maternal child health clinics and other health
and social services can play an important role. In this way, voluntary
testing and counselling, education about risk behaviours, and the
distribution of condoms is possible. Such activities should be combined
with counselling, clinical management and physical care. It is important
to build on the care that people already provide for themselves
within their communities. Incorporating and strengthening existing
programs such as cancer care or care for the chronically ill are
important strategies.
The figure below provides a visual representation of a conceptual
framework of comprehensive care across the continuum.
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Reproduced from: Osborne, C. M., van Praag, E. & Jackson, H. (1997). Models of care for patients with HIV/AIDS. AIDS (11B), 135-141. |
• Steps in linking services across the continuum
1.
Assess the level and type of need
What are the reported numbers PLHA with HIV related illnesses in
your area? Refer to records in local hospitals, antenatal, STD or
TB clinics where HIV testing has been carried out. If available,
check the national HIV data base. If this information is not available,
while maintaining the need to respect confidentiality, make an assessment
yourself by observing and discussing these numbers with various
community groups.
What are the local attitudes towards AIDS? How are PLHA viewed by
their families and communities? What do PLHA and their families
need? Often their needs are financial and material support such
as lack of jobs, money, food, clothing, shelter, water, transportation,
and medicines. Other major needs might include medical care, emotional
and spiritual support, and education about HIV.
What care is already being provided? What is the impact on health
services and staff? What are the trends for outpatient attendance,
hospital admissions and bed occupancy rates? Are staff experiencing
difficulty related specifically to HIV care?
What referral problems exist between hospitals and community health
facilities?
Are appropriate medicines available at the relevant sites of care?
What are the most commonly used medicines for treating HIV related
infections? Who would pay for the medicines? Are their adequate
supplies of condoms and other household and medical supplies?
How are HIV related illnesses treated in the community? Who treats
the PLHA, in what manner?
How is contact maintained with people diagnosed with HIV and later
discharged? To what extent are counselling and testing available
and being used?
What community services already exist? Could they be expanded or
further utilized to include care for the PLHA?
Could care for PLHA be incorporated into the care of people with
other chronic illnesses?
Could links be improved with STD, family planning, TB, maternal/child
health services or other social services?
What other services are there in the community? Are NGOs providing
care, prevention, education or counselling?
This list of assessment measures might be too much for the isolated
nurse/midwife. However, it is important to consider as many of these
questions as possible within your region.
2. Developing
strong referral systems
Setting up a workable structure will require coordination with the
hospital, clinics, voluntary and confidential counselling and testing
and other support agencies (government and non-government). A good
referral system is important between hospital, home, clinic and
other people and agencies (e.g. traditional healers, community health
workers).
3. Staff and training
It is important to train community health workers and others in the care and prevention of HIV. This training can include management of common illnesses such as skin rashes, diarrhoea, and how to train family carers in basic nursing and home care (Fact Sheets 4 & 5). It might also be important to provide them with the basic essential medicines and supplies. These community health workers can be important to the team as they have first hand knowledge of the community.
4. Wider involvement
Make strong community links by using established structures:
• organize meetings and workshops with local healers. These gatherings provide valuable opportunities for sharing knowledge and perceptions about HIV/AIDS, the roles for healers in prevention and care, infection control, and referrals to hospitals and clinics
• meet with local NGOs and community leaders including religious and traditional organizations to discuss their perceptions of the epidemic and possible ways to support families and provide community education
• develop and maintain close links with staff from other agencies, education and welfare departments, including social workers, counsellors, and others working with PLHA and their families.
5. Counselling
Emphasize the importance of ongoing counselling, not just before and after HIV testing. It is important to combine care with emotional support and education on HIV prevention and infection control. Ideally, all staff need training in basic counselling skills (Fact Sheet 7). Also, referral systems should be maintained with the hospital based counsellor.
6. Care at home
Visits by the home care team are valued by PLHAs and their families for medical care and advice. Transport to hospital (where available), emotional support, education and help with basic needs (food, shelter, supplies) are also important. One of the most important issues is money. Sources of income (e.g. welfare departments, NGOs, starter grants for income generation) should be investigated and a list provided. It is also important that, when the family is unable to cope, PLHA who are critically ill, are referred to hospital if at all possible. However, many patients choose to die at home, so counselling (Fact Sheet 7), palliative care (Fact Sheet 8), and practical support for the PLHA and his/her caregivers is very important. Help might also be required after the PLHA has died, and could include emotional support, instructions on how to safely prepare the body, and funeral arrangements. (Fact Sheet 8).
7. Care costs
Sufficient resources need to be allocated in order that the continuum of care programme to be sustainable in the long term. Although training community volunteers can reduce some long term costs, consideration must be given to costs associated with on-going training and supervision (Fact Sheet 9). Direct costs to the family, such as payment for medical and traditional treatments, extra food and other items, should also be taken into account. Other costs, some of which are less easy to measure include: loss of earnings, loss of agricultural productivity, and the additional workloads put on women and girls.
8. Programme monitoring
Indicators for measuring the success of the continuum of care efforts need to be established at the start, and team members need to keep accurate records in order to assess the quality of care. A successful continuum of care involves using existing services appropriately so that the PLHA can use the site and service to best suited to their health and/or social service need. Team members may wish to monitor the following indicators of quality of care:
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of PLHA accessing resources in the continuum of care number of referrals number of PLHA who use the appropriate site to fit their health/social service needs types of linkages between resources and services number of drugs, medical supplies and condoms distributed changes in hospital attendance changes in community attitudes the number of PLHA sharing news of their diagnosis with family/friends satisfaction with treatment support for the PLHA and his/her carers and health care workers volunteer training given |
• Continuum of care checklist:
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Does the district plan or the review consider: |
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Questions for reflection
and discussion
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How can
a continuum of care be implemented in such a way that services
are provided for the PLHA and his/her family where they are
most needed? |
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References
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Allocating
Resources. AIDS ACTION Newsletter, (38), AHRTAG, 1997. Gilks,
C. et al. (1998). Sexual health and health care: Care and
support for people with HIV/AIDS in resource-poor settings.
Department of International Development (DFID), London. |