End-of-term evaluation
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OverviewThe Research, Evaluation and Policy Development Unit (REPDU) of the Caribbean Public Health Agency (CARPHA) is the principal regional health institution charged with providing support to countries in the monitoring and evaluation (M&E) of national HIV and AIDS responses. In partnership with Barbados National HIV and AIDS Commission (NHAC), the REPDU will undertake a comprehensive end-of-term evaluation of the Barbados National Strategic Plan for the period 2008-2013 in September 2014. The evaluation is underpinned by utilization focused (U-F) and results-based monitoring and evaluation (RBM&E) approaches. U-F evaluation concentrates on the evaluation questions which are of interest to stakeholders and promotes the use of findings through stakeholder involvement in the evaluation process (Patton, 2008). In this instance in order to conduct a robust assessment of the impact of the NSP, it is critical to incorporate the views of the key affected populations (KAP) who have been the beneficiaries of services and interventions throughout the life of the NSP. In this way the real life experiences of KAP can provide the necessary contextual value to the evaluation findings. MethodsA discrete research protocol was developed for the qualitative component (See Appendix I) Based on the situation in Barbados of limited staff availability and difficulties accessing some KAP beneficiaries, some focus group discussions (FGDs) were replaced by key informant interviews and some of the proposed groups were replaced with more readily accessible groups, to assist with the logistical challenges. However these changes in methods were not considered to compromise the original protocol or objectives of the qualitative evaluation in any way and in fact may offer added value to this enquiry. The table below outlines the FGDs and Key Informant Interviews that were conducted during the period September 10-17, 2014. Table 1. Focus Groups and Key Informant Interviews
*See Key Notes on Coordination of FGDS LimitationsAmong the MSM group, a FGD for ‘Bougies’ was not convened. Staff noted they had limited success in HIV programming with this population as established groups from which to access them are weak, due to the clandestine nature in which “Bougies” operate. Among Sex Workers, a male sex work/beach boy focus group was not convened because there are no established links with this population. However one male sex worker was part of the MSM group and offered limited insight into this population and interventions targeting them. Among adolescents the age was increased from 15-19 years to ages 17-24 years. This was because of the length of time it would take to gain parental consent and because there were no existing youth groups with members fitting the criteria currently operational. Among People with Disabilities the Barbados Council for the Disabled was not able to convene a single FGD due to the limited number of PWD that had engaged in the sexual and reproductive health programme. Additionally the range of needs among potential participants required special preparation, such as translation and wheelchair accessible transportation to the FGD site. Therefore it was agreed that key informant interviews would be conducted instead. A transgender group was not included in the proposed sample because of the small population size and anticipated challenges with access. This proved an incorrect assumption as this group whilst small in number were organized and more accessible than male sex workers (MSW), therefore this group replaced MSW. With the exception of the Sex Workers, the majority of the focus group participants and interviewees, while legitimate beneficiaries of services and interventions and members of the key affected populations (KAPs) were also volunteers, peer educators and activists in the HIV response or for their peers. This provided some benefits and risks for the evaluation. The benefits were that the participants were knowledgeable about HIV and STIs and the extent of services and interventions in Barbados. The risks were that their views may not represent the experiences of less enlightened persons that come into contact with HIV/STI services. FINDINGS FROM FOCUS GROUPS DISCUSSIONS AND INTERVIEWSPeople Living With HIVThis group was generally knowledgeable about HIV and STIs, although they thought that while the wider society and other PLHIV may also be knowledgeable about HIV, the same could not be said for STIs. They said little attention has been paid to educating people about STIs and the average PLHIV would not know signs and symptoms or the importance of treating STIs. The group agreed that information about HIV and STIs is not readily available to the public, “…Only during certain periods of the year you will find it, like World AIDS Day… or in June as it is approaching regional testing day, you will see the ads on TV regular” In their opinion if an individual has no specific reason to seek out information, or if you have not attended a workshop, vehicles to come by information are very limited and what is available is not detailed enough. They gave the example of the window period not generally being discussed or known about. Lack of accessible information and knowledge they believe explains what they observe to be an increase in the number of elderly persons attending the HIV treatment centre. Discussions included an emphasis on national programmes targeting the younger people with sexual and reproductive health messages, that may have resulted in older persons not receiving or paying attention to critical HIV prevention messages. With regards to the retention of myths and misinformation about HIV and AIDS they do feel that this is less of a concern now and encouraging changes have come about in this regard. However according to the group, among the general population the “AIDS kills, death secure” message of the nineties has not shifted in peoples’ minds, which they conclude from their experiences as ‘peer educators/animators’ working with the general population at health events. They say the persistence of this outdated belief is a barrier for HIV testing and contributes to the trauma of newly diagnosed PLHIV when people are still besieged by this notion. This also causes their families and friends distress. One woman said my mother said to me “I have no money to bury you now”, when she disclosed her HIV status to her. As far as they are concerned not enough has been done to replace old information and perceptions with up to date information on the current reality for PLHIV and treatment efficacy. The majority of the participants reported being highly appreciative and satisfied with the HIV treatment services held at Ladymeade Reference Unit (LRU), which is the national treatment site. In their view treatment has improved tremendously over the past five years and they find that medications now are far more tolerable than the earlier anti-retrovirals which has had a significant impact on their quality of life and outlook for the future. The group also praised staff at LRU, especially the nurses and doctors who they said were kind, compassionate consultative, professional and highly confidential. One person said “The service is really first class” another said “I love going there”. This was in reference to the feeling of peer support that they receive when they attend the treatment site and being able to assist and offer psychological support to newly diagnosed patients at the centre, which provides its own personal fulfillment. Only one person in the group [who is not a peer educator]? said “I find that the service is pretty good, but it could do with some upgrading, in terms of if you go there and you are not comfortable …when you go over to the section that does the bloods, they will not call out your name, they will call like a code…in the LRU medical area your name is called out and sometimes there are people in there accompanying other people, sometimes people just come in there and are looking around and your information gets out” They explained that as LRU is the central place for PLHIV it has become known to the general population, which has created problems for some people. An event two weeks prior to the FGD was recalled by a member of the group about a patient who came there and was afraid to leave the clinic because she said someone was outside waiting to see if she came out, so that he could spread the news to her community. She was assisted by this group member who created a distraction so that she was able to leave undetected, but he said that the young woman was very traumatized by the experience. None of the others in the group shared concerns about the use of names at LRU, but acknowledged that depending on your personal situation, how well you have accepted the diagnosis and how empowered you are as a PLHIV, then concerns regarding this particular issue will vary from person to person. The group also spoke highly of the support services offered at the Vashti Inniss Empowerment Centre and the HIV Food Bank. One woman said a house and financial and nutritional resources to support her children was provided for her. However outside of these services they say there is very little for PLHIV and valuable initiatives like the Caribbean HIV/AIDS Alliance project are coming to an end. The other programme that was briefly mentioned was the Family Care programme. One participant said he was able to do a training course there and secure a nine week job attachment. On the topic of stigma and discrimination (S&D) it was felt that not much has really changed in the past five or even 10 years. S&D is still a significant feature in the lives of PLHIV. None of them said they knew of any new policies or legislative changes to protect PLHIV in the past 5 years and in their view not enough in being done in this area. One person said: “There are too many surveys but not anything concrete being done to address the situation”. Neither are they aware of mechanisms to systematically record and address incidents of S&D. The common theme among the group were from experiences and contrasts concerning the treatment and attitudes that they receive at the ‘specialist facility’ LRU and the attitudes of health care workers at mainstream health services, such as the polyclinics and in particular the Queen Elizabeth Hospital (QEH). The following quotes on the hospital were typical:
The common complaint among the group was that PLHIV are always attended to last, so they experience long waiting times when accessing health services. Persons generally conveyed the hurt and the lasting impact that these negative experiences have on their lives, as they become conspicuous waiting while everyone else is attended to. In their view the fundamental differences in attitudes by staff at the QEH is lack of training. One person said when he was admitted to the QEH recently and began talking with the nurses, they told him that they had little experience of HIV and really did not know much about it. This lead to a discussion about the concerns the group had with the Ministry of Health’s plans to decentralize HIV treatment to polyclinics. While they said they have been reassured that they will still be able to access treatment at LRU, they are troubled that the polyclinics and the hospitals do not have properly trained staff with the right attitudes to treat PLHIV. They would like this feature to be secured before they embark on decentralizing HIV treatment. In relation to behaviour change communication (BCC) programmes, the group said that well respected individuals with HIV are the people that have had the greatest impact on empowering them and changing their behaviour. They explained that when workers are also PLHIV, these interventions have a greater impact compared to interventions from workers who do not share that unique experience. The interviewee gave an example : “No one at that clinic could have told me to take that medication besides [name of another PLHIV volunteer], I was not taking it because I was going to die, that is what I thought and then when I met her she tell me you know I have kids and grandkids… she said you take the medication and you can have kids and grandkids” this was after experiencing the death of her ex boyfriend, who died within a year of going on medication, therefore in her mind she believed that the same thing would happen to her, she said. Similarly as peer educators they said the experience of being trained to educate others about HIV and STIs and risk, has impacted positively on their own behavior. One person said, “If I am going to be preaching to the choir, I have to”. Although one person said that she noticed that when PLHIV are trained to do VCT and peer support, they are not treated equally to ‘professionals’ and that the programme does not empower PLHIV in this way as they are not given opportunities for paid employment or even given stipends for their travel expenses, which she said apart from being unfair, is also ineffective. They think if this was improved, PLHIV would be more willing to engage with service providers as many PLHIV are not currently accessing the services they need. Apart from support groups persons could not think of any other BCC interventions targeting PLHIV, although persons have access to Social Workers at LRU. They also feel that a greater focus be placed on behaviour change for secondary prevention and normalizing HIV and assisting persons to adapt to life after a positive diagnosis. In response to a question about the adequacy of NSP 2008-2013 objectives, the group said that the objectives are adequate but more needs to be done to ensure that they are translated into action. Download 0.92 Mb. Share with your friends:
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