Task shifting to lay personnel

As suggested by the STRETCH study, and the experience in Ugu district, to allow nurses to take on other duties, it will also be necessary to shift some of the nurse’s routine duties to lay personnel and community-based caregivers. At least one presentation at this conference demonstrated that some activities can be successfully transferred to HIV counsellors with careful training and support — and help the HIV programme meet its targets.

However another qualitative study found that while there is much to be gained by engaging peer-health workers in the delivery of services, there are some pitfalls as well, especially when there is a lack of capacity to manage these staff and a lack of interest in making them an integral part of the health team.

Training counsellors to perform HIV counselling and testing (HCT) services and correctly interpret results

“Trained lay counsellors can safely conduct high quality rapid HIV tests, in the home setting, and correctly interpret the results,” said Dr Tanya Doherty, of South Africa’s Medical Research Council, who presented the results of a quality assessment of community delivered home-based testing services in the Umzimkhulu subdistrict of Sisonke District in KwaZulu Natal.¹

In many other countries, lay counsellors routinely do thumb pricks and perform rapid HIV tests as part of HIV counselling and testing programmes. But, until recently most HIV testing in South Africa has been performed in health care facilities and by nurses— as only nurses were permitted to ‘draw’ blood.

“There are several barriers to this model - especially in rural areas without transport, the cost of getting to the facilities, stigma issues,” said Dr Doherty. There is a clear need to dramatically expand HIV testing services to non-clinical settings with lay counsellors, particularly to support the country’s HCT campaign.

“Also the primary health care revitalisation strategy is drawing heavily on community-based health workers,” said Dr Doherty. “So it is important to assess the ability of these workers to do certain tasks, including HIV testing.”

She presented data drawn from the quality assessment stage of an ongoing cluster randomised trial comparing testing rates between facility-based testing, and home based testing. The intervention group included 11 lay counsellors conducting door-to-door visits in eight rural communities in the sub-district. She noted that this is a poor rural area, where most households don’t have electricity or any running water to the house; rivers are usually used as a source of water; and the antenatal HIV prevalence is 35% with an infant mortality of 99 per 1000.

The lay counsellors were all recruited from the communities in which they work.

“We stuck with the same salary level that lay counsellors are earning within clinics — I think around four thousand rands,” said Dr Doherty.

Training to perform the rapid tests consisted of a two-week training course, with six weeks in-service training in clinics before counsellors were sent out to provide home based testing. A registered nurse supervises the team.

Counselling and rapid HIV testing is offered to all members of each household who are willing and consent to test.

To assess the quality of rapid testing, the lay counsellors were also instructed to take a dried blood spot sample from each individual tested, which was sent to an independent laboratory for quality control testing in Durban. Cell phones were used for data collection and uploading results (though Doherty noted this was just for study purposes and may not be necessary in the field).

High testing accuracy and uptake

Over the past year to eighteen months, 5,086 people have been tested. After a while, researchers concluded that they didn’t have to confirm negative test results. Out of the 3981 remaining blood samples, there were only fourteen cases where the results reported by the counsellors didn’t match the results from the lab.

In ten of these cases, the lay counsellor reported to the lab that the result was indeterminate — but did not give the results to the individual until it was confirmed positive by the lab.

“So that is showing good insight on the part of the lay counsellors,” said Dr Doherty.

Overall, the lay counsellors result achieved a specificity (true negative) of 99.9% (95% CI: 99.7 – 99.9%), and a sensitivity (true positive) of 98.0% (95% CI: 96.3 – 98.9%).

“Both measures of sensitivity and specificity are very high — in fact our lower bound of the confidence interval for specificity of 99% is actually higher than the NIH standard of 98% for assessing the quality of rapid HIV tests,” she said.

“This evidence supports the recent change in policy of the South African Government allowing lay counsellors to do finger pricks for certain blood tests.  And it has important implications for the expansion of HCT services in South Africa and in other countries, especially in community-based settings,” she said.

How much this affects access compared to clinic-based testing has yet to be determined. However, during the question and answer session, Dr Doherty said that the testing uptake throughout the intervention has been around 75% in this very rural area.

“Prior to the intervention only 33% of individuals knew their HIV status — so the acceptance has been huge! Mostly due to the involvement of the chiefs [and other leaders] in the area who were the first to test, and who then promoted these lay counsellors within their meetings.”

Implications

While training and sending out teams of lay counsellors who can provide and correctly interpret rapid HIV tests in the home would be a needed step towards providing greater access to HCT — described as “a fundamental human right” by Jonathan Berger of Section 27 during the rapporteur session — there are some also concerns about how such testing would be implemented.

“Implementation of these services may raise further human rights issues: including privacy, autonomy, confidentiality, equality and unfair discrimination,” said Berger. While it clearly can be important to get support from community leaders for home-based testing in communities, programmes should make certain that the support does not constitute coercion — such as an order from the chief to be tested.

There is also a clear need to make sure that when HCT is rolled out to more remote communities, that it comes with adequate support services, particularly for women who test positive in front of their husbands and who may be at risk of domestic violence.

Furthermore, testing and and the delivery of results needs to be backed up by effective linkage to HIV care and treatment programmes. This will enable newly diagnosed people to quickly receive critical diagnostic tests (TB screening, CD4 cell testing) and treatment services (IPT and ART if eligible). (See the HIV and TB in Practice article.)

Task shifting of HCT to community-health workers is necessary because the formal health sector doesn’t always reach people where they need services in the community and at home. Other tasks, such as support services to help people adjust to being HIV-positive, assistance completing referrals, preparing for ART, adherence support, follow-up and lost-to-follow-up (LTFU) tracing, need to be shifted to caregivers in the community as well.

WHO recommends task-shifting “less technical tasks to lessen the burden on overworked health care workers. Involving community members in the clinic helps enable community outreach. In addition, it could provide employment, training and a small financial income for unemployed people living with HIV/AIDS.”

Community care providers strengthen linkage to and retention in ART programme

Several programmes reported that community health workers are indeed essential in helping people who test positive make it to the ART site, and once there, stay in care.

For instance, in Tanzania, Africare’s KAYA community care initiative, a CDC-PEPFAR funded home based care project has introduced a ‘provider linkage and referral strategy (PLRS).’² The strategy entails linking each volunteer community home based care provider to an HIV care and treatment centre, making sure they are stationed with the facilities catchment area and engaged in patient tracking, to strengthen linkages between the health facility and the clinical services.

The strategy was used in 31 facilities to monitor LTFU tracking and return rates between July and December 2010. The community home based care providers tracked LTFUs with a CTC registry book, provided home-based counselling to the patients and encouraged them to return to care. Facility-based supervisors provided ongoing supervision. The intervention was highly effective. By the end of the study period, 220 out of 285 (77%) of the LTFU patients referred to the home-based care providers were returned to care.

Another study in rural South Africa reported similar findings. “Community health workers are key for referring, encouraging and maintaining clients in the formal health system,” said Dr Ahmad Haeri Mazanderani of the Good Start Foundation, but he questioned whether such systems are sustainable, noting HBC organisations may or may nor be registered for providing such services, and consequently may or may not be subsidised and regulated.”³

“A successful and sustainable CHW programme depends on the existence of an enabling environment,” he said. The following are indispensable: a supportive regulatory framework, functioning referral systems, robust quality assurance mechanisms, adequate remuneration of health workers, and sufficient resources for health service delivery.

There has been little evidence documenting the experiences of community health workers in linking clients to the formal health sector in rural South Africa — or to what extent this potential resource is being utilised in order to improve the level of health care to underserved populations.

So he and his colleagues decided to conduct the Care in the Home Study in Bushbuckridge, a rural municipality in Mpumalanga province, designated as one of the 22 most poverty stricken areas of South Africa. It is comprised of 235 dispersed villages and rural settlements, with a population greater than 500,000 people. The health system is overstretched, and community care groups have sprung up to meet the need for services.

The qualitative study investigated the relationship between community health workers, primary care givers and clients, sampling nine out of 37 home-based care organisations, 18 out of 246 volunteer community health workers and 32 of their clients.

The study found that the community health workers were crucial for case-finding. (The majority of clients (23 of 32) were found going door-to-door within the communities) and in linking clients to the formal health care system – but there were not fully integrated in the health system (the clinics rarely referred patients to community health workers for support services).

“The current lack of standardised referral practices represent a health system in which CHWs are not fully integrated.,” said Dr Mazanderani.

“It was good in the beginning but not in the end. One of the reasons that made me leave was that there was a lot of critics where I used to work. I started thinking to myself why I even bothered to work with them because I wasn’t even getting paid. It was as if I was taking their job away. They made me feel as if I was wrong when I asked them questions. Sometimes when I asked for something they would tell me they were too busy. They wouldn’t take my presence into consideration,” said one community health worker in the study.

Furthermore, the majority of community health workers made explicit reference during the interviews to the need to use their own money (for client transport to the clinic) or their own food, to ensure the client’s treatment adherence.

“When I find a patient who isn’t working I sometimes have to sacrifice myself and use my own money to transport him to the hospital or the clinic. And the organisation doesn’t reimburse us for it nor give us a travelling allowance. Another sacrifice we make is that when we find that the patient doesn’t have any food we take our own maize meal to cook for him so he can eat before taking his pills because most pills nowadays require a person to eat before taking them,” said another community health worker.

“As the CHWs belong to the same impoverished communities they serve, this raises questions of whether they are not putting themselves at risk by their continued volunteering work?” asked Dr Mazanderani.

“Community health workers offer an essential resource for patient mobilisation into care. However, risk-protection strategies for community health workers are urgently needed,” concluded Dr Mazanderani. “However, risk-protection strategies for CHWs are urgently needed to ensure the sustainability of the community health worker programme and prevent a downward spiral of impoverishment and destitution for communities.”

Expert patients

Similarly, employing expert patients in the health services “can achieve better adherence patterns, reductions in stigma, provide positive role models for clients, and lead to a reduction in lost-to-follow-up (LFTU) cases and other improved health outcomes,” said Taru Jaroszynski who presented findings on the strengths and weakness of the Expert Patient Programme, run by Paediatric AIDS Treatment for Africa (PATA).⁴  “But we have a long way to go before treatment teams learn to fully engage expert patients and maximise their contributions to a multidisciplinary team.”

The Paediatric and Adolescent AIDS Treatment for Africa (PATA) is a network of treatment teams at more than 130 paediatric clinics in 23 countries scattered across Sub-Saharan Africa.  PATA hosts forums with teams of doctors and nurses and counsellors and pharmacists, meeting in a collaborative learning environment to discuss their successes and challenges in paediatric treatment, care and prevention and to set quality improvement tasks for the year ahead.

“At the PATA forum in 2007, a common challenge articulated by many teams was the lack of human resources within clinics, which was leading to long patient waiting times and limited psychosocial support services, and ultimately resulting in compromised quality of care,” said Jaroszynski. In response, PATA launched the Expert Patient Programme, funded by One to One Children’s Fund. This programme was modelled on the Partners in Health accompagnateur programme. The goal has been to include people living with HIV in the multidisciplinary treatment teams, and provide employment, training and an income for people living with HIV/AIDS.

 They were called expert patients in acknowledgement of their expertise in ART adherence, and their knowledge of the clinic, based on their own experience of living with HIV or caring for a child affected by HIV.

How PATA teams began incorporating expert patients

The PATA Treatment Team typically consists of a doctor, nurse, pharmacist and counsellor working together in a facility. Jaroszynski says that they have usually first been exposed to the expert patient programme at PATA Forums.

 “The team may identify a need for task shifting in their clinic. The team must then examine their own process and identify the tasks that need to be shifted and the other services that can be provided by an Expert Patient/s. They need to consult local labour laws and policies and develop a plan on how to use the (US) $216 per month provided by the programme,” she said.

The team is responsible for appealing to clinic management for permission to run the programme and then they have to recruit, train, supervise and mentor the expert patients in their role.

 “The ultimate goal is to have the Expert Patients fully integrated in the Treatment Team, as a key member who brings new knowledge, skills and a deeper community understanding to the team and helps in the continuous quality improvement project,” said Jaroszynski. This approach to task shifting can be adaptable to address the needs of the specific clinic and is driven by a team of frontline health care workers. But that also means there is a lack of standardisation and in some cases no overarching national endorsement of task shifting.

PATA’s Expert Patient Programme has been running for five years with 182 Expert Patients working in in 49 clinics in 14 countries. Each clinic employs about three to four expert patients who work about 25 hours per week. Monthly wages for the Expert Patients vary widely from $7 dollars to $250.  The majority of Expert Patients are women, most of whom were previously unemployed.

Evaluating how Expert Patients work in practice

But to better characterise how and what expert patients were doing, and how well the programme was doing, Jaroszynski and colleagues performed interviews and combed reports over a two year period, analysing the data by using a thematic content analysis.

 They found that expert patients are being employed to perform a wide variety of tasks within clinics. This has enabled clinics to expand their repertoire of services. For instance, at one clinic in Transmara, Kenya , Expert Patients conduct home visits and act as treatment buddies - a service that would not exist otherwise. Teams at the clinic report they benefit from having more time to spend with patients, as a result of expert patients freeing up their time, according to Jaroszynski.

Clinics are more child-friendly. For instance, at Groote Schuur Hospital in Cape Town, caregivers are able to enjoy private consultations with doctors or nurses because children are looked after by the Expert Patients. Clinics are also more adolescent-friendly. In Zimbabwe, older adolescents are employed to act as peer educators and support group facilitators.

Now employed, many expert patients report improvements in the quality of life for themselves and their families.

”There are better links between health care teams and communities as a result of the under-acknowledged community liaison role that expert patients fill.  Expert patients often fill a 'cultural broker' role helping patients navigate to and around the clinic,” said Jaroszynski.

So on the plus side, “people living with HIV/AIDS have great energy and passion and are a incredible resource for busy clinics and thus must be fairly remunerated to ensure that their value is acknowledged,” said Jaroszynski. “Clinic qualitative data has linked the programme to better adherence patterns, reductions in stigma, positive role models for clients, a reduction in lost to follow up cases and other improved health outcomes.”

 Dropping the other shoe

However the Expert Patient programme also needs to consider how the programme is working for the Expert Patiets themselves. A recently created Expert Patient Review Committee  is grappling with difficult issues regarding how the programme is working on the level of the expert patient as an individual, the clinic and the overall management. Jaroszynski highlighted a few of the programme’s challenges.

”At an individual level Expert Patients have poor job security and limited career advancement,” said Jaroszynski, and even when they are doing their best, the clinics are failing to fully engage them. At the clinic level, clinic staff need to be trained on how to mentor and supervise expert patients so they are included in the team and basic good employment standards are met.

”Policies need to be developed to safeguard expert patients — and this includes more stringent guidelines for clinics on employing expert patients. However, the greatest challenge at a management level is the poor integration of programmes such as the Expert Patient Programme within an overall district plan and the limited cooperation of NGOs at a local level,” she said.

In some clinics, expert patients form part of a larger body of community health care workers funded by different organisations. But the different funding streams and NGO approaches “results in inequality in pay and benefits; confusion over lines of reporting; different names and titles for community health workers doing the same tasks; professional jealousy as some community health care workers have access to more job security, career advancement and training opportunities; and pettiness and competition between different NGOs is a huge difficulty,” said Jaroszynski.

 These are not minor problems, but she believes that the PATA network may provide the ideal platform for bringing together stakeholders working with community health care workers in local contexts, to strategically plan how such programmes can become more integrated within an overall health plan.

”We are hoping to start this conversation now!” she said. “Until such a time as the Health Departments are able to provide clinics with funds to task-shift to improve the quality of care in clinics and include community members in health care treatment teams, there is a need for NGO-run programmes such as the Expert Patient Programme.”

 However, she also pointed out that this presented something of a catch 22, since NGO engagement in filling this need may contribute to health department inaction.

”Our challenge is to channel energy into advocating for the widespread adoption of these programmes so that they are recognised as an integral part of the health care system,” she concluded. “After all, our children and their families deserve the highest quality care.”