University of Groningen
Exploring strategies to optimize pharmacotherapy with antiretrovirals in Papuans living with
HIV
Sianturi, Elfride
DOI:
10.33612/diss.116883036
IMPORTANT NOTE: You are advised to consult the publisher's version (publisher's PDF) if you wish to cite from it. Please check the document version below.
Document Version
Publisher's PDF, also known as Version of record
Publication date: 2020
Link to publication in University of Groningen/UMCG research database
Citation for published version (APA):
Sianturi, E. (2020). Exploring strategies to optimize pharmacotherapy with antiretrovirals in Papuans living with HIV. Rijksuniversiteit Groningen. https://doi.org/10.33612/diss.116883036
Copyright
Other than for strictly personal use, it is not permitted to download or to forward/distribute the text or part of it without the consent of the author(s) and/or copyright holder(s), unless the work is under an open content license (like Creative Commons).
Take-down policy
If you believe that this document breaches copyright please contact us providing details, and we will remove access to the work immediately and investigate your claim.
Downloaded from the University of Groningen/UMCG research database (Pure): http://www.rug.nl/research/portal. For technical reasons the number of authors shown on this cover page is limited to 10 maximum.
CHAPTER 6
122
SUMMARY OF MAIN FINDINGS
Many efforts have been taken to improve health care for people living with HIV (PLHIV) in Indonesia including providing antiretroviral therapy (ART) free of charge to patients. Several studies of this thesis were performed to explore the experiences of PLHIV being on ART in Indonesia, especially in Papua. In particular, we investigated factors associated with regularly attending counselling, the level of adherence to ART and the factors associated with adherence and the level of health literacy. Finally, we also investigated the role of the pharmacist in HIV care in Indonesia.
In the first study, we conducted a cross-sectional, paper-based survey among 880 PLHIV patients on ART attending outpatient clinics of a referral hospital in Jakarta. The majority of patients attended regular counselling. Age, comorbidities, sexual orientation, employment status and distance from hospital were associated with regular counselling attendance. We recommended that counselling services should be reviewed to ensure that they are near home and fit the needs of older patients or patients with co-morbidities and minorities. Tailoring counselling may improve attendance (Chapter 2).
The second study was a cross sectional survey of 331 PLHIV from two hospital- outpatient clinics who were on antiretroviral treatment (ART) for more than 6 months in Papua, Indonesia. A total of 65.9% of participants were adherent, assessed using the self-reported Medication Adherence Rating Scale (MARS). Being Papuan and feeling more distant, a stigma type, assessed using the HIV stigma scale, decreased the likelihood of adherence.
(Chapter 3.1). Furthermore, a total of 38.5% of the participants had low health literacy,
123
We found that being on a fixed-dose combination reduced the odds of having low health literacy. We found that being on a fixed-dose combination, having support taking their medicines, perceiving medications as being overused and harmful was associated with low health literacy. (Chapter 3.2). Overall, these survey-findings give some insights into non
adherence and the factors associated with non-adherence.
The third study further explored the experiences to be on ART. We did a qualitative study in 5 customary areas in Papua island. Semi structured interviews were conducted with 13 Papuans living with HIV and 14 health care providers (HCPs). Interviews were transcribed verbatim and coded. Organization of care, healthcare providers, social support, and patient’s knowledge, beliefs and routines were important themes. Stigma from family, community and HCPs were found in all themes. Furthermore, practical problems such as transportation because of long distance also played a role. Despite free access to ART, Papuans living with HIV struggle to remain on treatment. Broader strategies to reduce stigma taking into account local culture and religion should be a priority for the centralized and local government
(Chapter 4).
In the final study, we conducted a survey of hospital pharmacists working with PLHIV within 33 provinces in Indonesia and final-year pharmacy students of 9 universities from the province of Java in Indonesia. Overall, 1263 participants were included, 250 hospital pharmacists and 1013 students. Pharmacists and pharmacy students had reasonable knowledge about HIV, were empathic and had a moderate level of stigma. We found that empathy, HIV treatment knowledge as well as the degree of willingness to counsel PLHIV were negatively associated with stigma. Being a pharmacist was positively associated with
124
stigma. Improving education and training at undergraduate and postgraduate level may reduce
stigma and strengthen the role of pharmacists in caring for PLHIV in Indonesia (Chapter 5). METHODOLOGICAL CONSIDERATIONS CONDUCTING RESEARCH IN INDONESIA
Indonesia is a country with more than 250 million inhabitants, belonging to 400 ethnic groups living on 17 thousand islands. To conduct research to reach a sufficient sample size is challenging in this context. We used paper-based questionnaires, online surveys distributed by a mobile phone application and interviews to collect data. We found that each method has limitations and advantages. Administering the paper-based surveys and interviews was time consuming and we could only reach a limited number of participants. We undertook research in areas of Papua which are so remote that they are practically difficult to reach and where security issues are additional barriers [1]. Taking the efforts we could obtain data which gave valuable information on the situation in those areas. With the online survey, we reached a much wider number of participants, across Indonesia. Using a mobile phone application was feasible achieving a high response rate. Use of internet and mobile phones is high and continues to increase in Indonesia [2]. However, shortly after the start of our study, a tsunami occurred in Indonesia, which led to missing data because of failing internet connections. Furthermore, this method was not suitable for rural areas in Papua where poor internet connection is common.
We used a number of questionnaires to assess stigma, health literacy, adherence, beliefs about medicines. All of those questionnaires have been developed and validated in English in the context of high-income countries. We used the standard and accepted method of translating
125
the questionnaires into the target language. In this process, the backward translations were modified several times because the target language does not recognize verb tenses [3]. Therefore, the final version included words related to time. Such linguistic adjustments cannot be avoided. Furthermore, translations should be done in a manner that the theoretical meaning is kept, but also adapted to the cultural context [4]. It has been shown for the Beliefs about Medicines Questionnaire that some items do not translate well and the cultural meaning of terms like natural remedies vary considerably [5]. Therefore, comparing the results for Indonesia with other countries has to be done cautiously. The work in this thesis can be seen to contribute to a foundation to do research in this field in Indonesia. More work is needed in the further cross-cultural validation of those questionnaires.
Finally, the author of this thesis is a pharmacist with experience of being a health care professional working with PLHIV in Papua, speaking Bahasa Indonesia, having her cultural roots inSumatera and Java. The research has been performed in collaboration with many different professionals with different professional background, coming from different ethnic backgrounds in Indonesia and other countries to ensure methodological rigor. However, it is recognized that this specific background of the researcher has an impact on the study topic, the angle for approaching the topic, choosing the theoretical framework, analyzing and interpreting the data.
STIGMA IN PAPUANS LIVING WITH HIV
Stigma is described as the process of labelling, stereotyping, separating and discriminating people or groups from their community [6]. Being stigmatized was common for PLHIV as has been shown in the different studies of this thesis. As described in the wider literature
126
exploring stigma and health, we found that cultural norms and social structures both played a role for PLHIV in feeling stigmatized [7]. In line with Swan, we also saw that some PLHIV felt they had multiple stigma (e.g., being Papuan, being HIV infected, being economically disadvantaged) [8]. We also found evidence that being stigmatized created fear, anger, and pity as described by others [9]. Emphasizing the importance of addressing stigma in PLHIV. Even though most people consider stigma as a social problem, stigma should be addressed as an effect of the disease [10]. Leprosy, HIV, mental disease and sexually transmitted diseases have been recognized as the most frequent diseases to receive stigma from others. Furthermore, stigmatization was also found in various other diseases including epilepsy [11], patient lung cancer related to smoking habits [12] and irritable bowel syndrome [13]. In HIV and other diseases associated with stigma, the existing treatments would be incomplete without addressing stigma reduction. The source of stigma can be internal and external, however the power of stigma to make people feel down is similar irrespective of diseases and conditions [14]. Most studies showed that stigma leads to incompetence of people to follow
instructions for their medication, eventually leading to poor clinical outcome [15],[16] and even suicide [17]. In this thesis, the context in which the stigma is experienced by PLHIV has been studied in various ways. This information can be used to think of ways how to reduce stigma [9].
HOW TO REDUCE STIGMA IN PLHIV IN INDONESIA?
In this thesis, we have shown that stigma was an important barrier for patients to cope with treatment and be adherent to ART. Finding ways to reduce stigma would be important to improve care for the Indonesian PLHIV. Research has been done finding ways to reduce stigma [18],[19]. However so far, limited research on stigma and HIV has been carried out in Indonesia. A number of studies on stigma in Indonesia focused on leprosy [20]–[22]. These
127
studies on leprosy could be good examples to inform initiatives for stigma reductions on the HIV population in Indonesia.
It has been shown that testimonies and contact events for communities, increased knowledge about the cause of leprosy, decreased stigma and changed the perspectives of the community about leprosy [20]. Similar initiatives involving people living with HIV in India reduced stigma in healthcare providers and in the community [23]. Having trained peer and lay counsellors involved in leprosy care reduced stigma and increase quality of life of leprosy patients, especially female patients [21]. Finally, improving leprosy patient’s economic situation with a microfinance-service combined with counselling improved self-esteem of patients and increased their involvement with the community [22],[24].
To reduce stigma for PLHIV in Indonesia testimonies could be used for wider information campaigns. Based on the findings of this thesis, we suggest using role models for these testimonies, such as an HIV infected mother of a healthy baby or PLHIV who are economically independent. Economic independence could be stimulated by funding microfinancing-services to start a small business in the area of agriculture. This could lead to social transformation as well.
HOW TO STRENGTHEN THE ROLE OF THE PHARMACIST IN CARING FOR PLHIV IN INDONESIA?
So far, the role of the pharmacist in HIV care seems to be limited in Indonesia [25]. Pharmacists have been shown to improve clinical outcomes of PLHIV [26]. Based on the findings of our studies, pharmacists should address adherence as this was found to be lower
128
than in other developing countries [27]. Counselling is an obligatory part when dispensing ART. Pharmacists should be better trained to perform this task. During counselling, pharmacists can address clinical problems, taking into account the social problems patients may have [28]. This requires knowledge of HIV, good communication skills in asking open questions, and identifying the underlying problems. Empathy between pharmacists and PLHIV is a prerequisite to conduct such a service [29]–[31]. Being aware of behavior which may make patients feeling stigmatized is also important. Furthermore, pharmacists need to be familiar with the local language and culture. Teaching knowledge, skills and attitudes during undergraduate and postgraduate training is a key factor. Providing training which includes contact with PLHIV during internships may improve communication skills of students [32]. Educational institutions should take a lead in this area. We also encourage central and local governments to provide routine training in improving HIV knowledge and stigma reduction for pharmacists [33].
Another key factor would be to review how dispensing and counselling is organized within the facilities. Pharmacists need to have sufficient time for counselling as part of the services offered to PLHIV around dispensing medication. Furthermore, the location where services are provided should be reviewed. Based on the findings of this thesis, PLHIV wish to have sufficient privacy to be able to discuss their problems. On the one hand, this may be done by having separate windows for ART and non-ART dispensing. On the other hand, PLHIV may be reluctant to use such windows if it is common knowledge that these are for HIV patients only.Another way would be to have, counselling rooms for all patients, irrespective of their disease, taking into account how to protect patient’s privacy [34],[35].
129
Integrating the services provided for PLHIV with other services for chronic diseases remains a challenge [35]. Overall, there is a great need to strengthen primary care services in Papua, including the services for PLHIV taking into account the specific challenges we found in this thesis. We encourage stakeholder to enhance the pharmacists’ role in HIV care by capacity building. To strengthen interprofessional collaboration of pharmacists with other healthcare providers is also important [31].
CONCLUSIONS
Adherence to medication remains a problem in HIV in Indonesia, in particular in Papua. To improve clinical outcomes initiatives are needed to improve adherence which should fit the situation in Indonesia. Problems in infrastructure, transportation, communication and community values add to the complexity. Increased availability of ART and bringing the medication closer to PLHIV seems not enough to solve HIV problems, especially in Papua where feeling stigmatized by the disease is high. Sigma reduction is important to improve health care for PLHIV. Improving education of pharmacists and pharmacy students in HIV care and strengthening the role of the pharmacist in HIV care may be one way forward.
130
REFERENCES
[1] J. Munro and L. Butt, “Compelling Evidence: Research Methods, HIV/AIDS, and
Politics in Papua, Indonesia,” Asia Pacific J. Anthropol., vol. 13, no. 4, pp. 334–351, 2012.
[2] Asosiasi Penyelenggara Jasa Internet Indonesia, “Penetrasi & Prilaku Pengguna Internet Indonesia,” 2017.
[3] J. Epstein, R. M. Santo, and F. Guillemin, “A review of guidelines for cross-cultural adaptation of questionnaires could not bring out a consensus,” J. Clin. Epidemiol., 2015.
[4] D. E. Beato, C. Bombardier, F. Guillemin, and M. B. Ferraz, “Guidelines for the Process of Cross-Cultural Adaptation of Self-Report Measure,” Spine (Phila. Pa.
1976)., vol. 25, no. 4, pp. 3186–3191, 2000.
[5] A. G. Granas, L. S. Nørgaard, and S. K. älvemark Sporrong, “Lost in translation?. Comparing three Scandinavian translations of the Beliefs about Medicines Questionnaire.,” Patient Educ. Couns., vol. 96, no. 2, pp. 216–221, 2014.
[6] B. G. Link and J. C. Phelan, “Conceptualizing stigma,” Annu. Rev. Sociol, vol. 27, pp. 363–385, 2001.
[7] G. Scambler, “Health-Related Stigma,” Sociol. Heal. Illn., vol. 31, no. 3, pp. 441–455, 2009.
[8] H. Swan, “A Qualitative Examination of Stigma Among Formerly Incarcerated Adults Living With HIV,” SAGE Open, vol. 6, no. 1, pp. 1–18, 2016.
[9] A. E. R. Bos, H. P. Schaalma, and J. B. Pryor, “Reducing AIDS-related stigma in developing countries: The importance of theory- and evidence-based interventions,”
Psychol. Heal. Med., vol. 13, no. 4, pp. 450–460, 2008.
[10] H. A. Cross, M. Heijnders, A. Dalal, S. Sermrittirong, and S. Mak, “Interventions for stigma reduction-part 1: Theoretical considerations,” Asia Pacific Disabil. Rehabil. J., vol. 22, no. 3, pp. 62–70, 2011.
[11] D. Baker, F. J. R. Eccles, and H. L. Caswell, “Correlates of stigma in adults with epilepsy: A systematic review of quantitative studies,” Epilepsy Behav., vol. 83, pp. 67–80, 2018.
[12] S. Rose, B. Kelly, A. Boyes, M. Cox, K. Palazzi, and C. Paul, “Impact of perceived stigma in people newly diagnosed with lung cancer: A cross-Sectional analysis,”
Oncol. Nurs. Forum, vol. 45, no. 6, pp. 737–747, 2018.
[13] E. Rochmawati, R. Wiechula, and K. Cameron, “Centrality of spirituality/religion in the culture of palliative care service in Indonesia: An ethnographic study,” Nurs. Heal.
Sci., vol. 20, no. 2, pp. 231–237, 2018.
[14] B. G. Link and J. Phelan, “Stigma Power,” Soc. Sci. Med., no. 103, pp. 24–32, 2014. [15] L. S. Rintamaki, T. C. Davis, S. Skripkauskas, C. L. Bennett, and M. S. Wolf, “Social
Stigma Concerns and HIV Medication Adherence,” AIDS Patient Care STDS, vol. 20, no. 5, pp. 359–368, 2006.
[16] I. T. Katz et al., “Impact of HIV-related stigma on treatment adherence: systematic review and meta-synthesis.,” J. Int. AIDS Soc., vol. 16, no. 3 Suppl 2, 2013.
[17] J. Hua et al., “HIV and stigma in Liuzhou, China,” AIDS Behav., vol. 18, no. SUPPL. 2, pp. 203–211, 2014.
[18] D. Rao, A. Elshafei, M. Nguyen, M. Hatzenbuehler, S. Frey, and V. Go, “Multi-level Stigma Interventions: State of the Science and Future Directions,” BMC Med., vol. 17, 2019.
[19] L. Nyblade et al., “Stigma in health facilities: why it matters and how we can change it,” BMC Med., vol. 17, no. 1, p. 25, 2019.
131
van Brakel, “A Cluster-Randomized Controlled Intervention Study to Assess the Effect of a Contact Intervention in Reducing Leprosy-Related Stigma in Indonesia,” PLoS
Negl. Trop. Dis., vol. 9, no. 10, pp. 1–24, 2015.
[21] M. Lusli et al., “The Impact of a Rights-Based Counselling Intervention to Reduce Stigma in People Affected by Leprosy in Indonesia,” PLoS Negl. Trop. Dis., vol. 10, no. 12, pp. 1–25, 2016.
[22] D. Dadun et al., “Impact of socio-economic development, contact and peer counselling on stigma against persons affected by leprosy in Cirebon, Indonesia - a randomised controlled trial,” Lepr. Rev., vol. 88, no. 1, pp. 2–22, 2017.
[23] L. Nyblade et al., “HIV Stigma Reduction for Health Facility Staff: Development of a Blended- Learning Intervention,” Front. Public Heal., vol. 6, no. June, pp. 1–13, 2018. [24] D. Dadun, R. M. H. Peters, W. H. van Brakel, J. G. F. Bunders, I. Irwanto, and B. J.
Regeer, “Assessing the impact of the twin track socio-economic intervention on reducing leprosy-related stigma in Cirebon District, Indonesia,” Int. J. Environ. Res.
Public Health, vol. 16, no. 3, pp. 1–20, 2019.
[25] N. Ajagu, M. U. Anetoh, and S. O. Nduka, “Expanding HIV/AIDS care service sites: A cross sectional survey of community pharmacists’ views in South-East, Nigeria,” J.
Pharm. Policy Pract., vol. 10, no. 1, pp. 1–12, 2017.
[26] P. Saberi, B. J. Dong, M. O. Johnson, R. M. Greenblatt, and J. M. Cocohoba, “The impact of HIV clinical pharmacists on HIV treatment outcomes: A systematic review,”
Patient Prefer. Adherence, vol. 6, pp. 297–322, 2012.
[27] B. L. Genberg, Y. Lee, W. H. Rogers, and I. B. Wilson, “Four types of barriers to adherence of antiretroviral therapy are associated with decreased adherence over time,”
AIDS Behav., vol. 19, no. 1, pp. 85–92, 2015.
[28] N. M. Rickles, K. J. Furtek, R. Malladi, E. Ng, and M. Zhou, “Pharmacy student attitudes and willingness to engage in care with people living with HIV/AIDS,” Am. J.
Pharm. Educ., vol. 80, no. 3, 2016.
[29] B. A. M. Chevalier, B. M. Wats
on, M. A. Barras, and W. N. Cottrell, “Investigating strategies used by hospital pharmacists to effectively communicate with patients during medication counselling,” Heal. Expect., vol. 20, no. 5, pp. 1121–1132, 2017.
[30] M. Kunneman et al., “Humanistic communication in the evaluation of shared decision making: A systematic review,” Patient Educ. Couns., vol. 102, no. 3, pp. 452–466, 2019.
[31] B. A. M. Chevalier, B. M. Watson, M. A. Barras, and W. N. Cottrell, “Hospital pharmacists’ perceptions of medication counseling: A focus group study,” Res. Soc.
Adm. Pharm., vol. 12, no. 5, pp. 756–771, 2016.
[32] L. M. Okumura, I. Rotta, and C. J. Correr, “Assessment of pharmacist-led patient counseling in randomized controlled trials: a systematic review,” Int. J. Clin. Pharm., vol. 36, no. 5, pp. 882–891, 2014.
[33] J. M. Cocohoba et al., “Pharmacist counseling in a cohort of women with HIV and women at risk for HIV,” Patient Prefer. Adherence, vol. 6, pp. 457–463, 2012.
[34] H. Fay et al., “Stigma, health care access, and HIV knowledge among men who have sex with men in Malawi, Namibia, and Botswana,” AIDS Behav., vol. 15, no. 6, pp. 1088–1097, 2011.
[35] S. M. Topp, J. M. Chipukuma, M. M. Chiko, E. Matongo, C. Bolton-Moore, and S. E. Reid, “Integrating HIV treatment with primary care outpatient services: opportunities and challenges from a scaled-up model in Zambia,” Health Policy Plan., vol. 28, no. 4, pp. 347–357, 2012.
