University of Groningen Exploring strategies to optimize pharmacotherapy with antiretrovirals in Papuans living with HIV Sianturi, Elfride

University of Groningen

Exploring strategies to optimize pharmacotherapy with antiretrovirals in Papuans living with

HIV

Sianturi, Elfride

10.33612/diss.116883036

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Publication date: 2020

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Sianturi, E. (2020). Exploring strategies to optimize pharmacotherapy with antiretrovirals in Papuans living with HIV. Rijksuniversiteit Groningen. https://doi.org/10.33612/diss.116883036

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CHAPTER 7

SUMMARY

SAMENVATTING

ACKNOWLEDGEMENT-DANKWOORD

INTERNATIONAL PUBLICATIONS AND

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SUMMARY

The prevalence of HIV ranges between 0.1% and 2% across Indonesia with the highest prevalence found in the provinces Papua and West Papua. Recent figures suggest that death rates as well as HIV incidence in Indonesia increase which is in contrast to other areas in South East Asia which showed a decline. 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.

This thesis aims to explore the experiences of people living with HIV (PLHIV) taking antiretroviral therapy (ART) in Indonesia. In particular, we investigated factors associated with regularly attending counselling when receiving ART, 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 chapter 2 we focused on identifying the barriers and facilitators of attending HIV counselling in an urban area of Indonesia. We conducted a cross-sectional, paper-based survey among 880 patients on ART attending outpatient clinics of a referral hospital in Jakarta. Age, comorbidities, sexual orientation, employment status and distance from hospital were associated with regular counselling attendance. This study suggests 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.

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In chapter 3 we determined the level of adherence and investigated whether stigma, beliefs about medicines, sociodemographic characteristics including ethnicity are associated with adherence in PLHIV in Papua, Indonesia. This chapter also examined the level of health literacy among PLHIV in Indonesia and assessed associations between characteristics of medication, beliefs about medicines, stigma, and health literacy. A cross sectional survey was conducted from two hospital-outpatient clinics in Papua, Indonesia. While a total of 65.9% of participants were adherent, the ethnicity of being Papuan and taking a distance to others were associated with non–adherence. Targeted interventions should be developed to improve adherence in this group. Furthermore, one-third of the participants had low health literacy assessed using the short version Test of Functional Health Literacy in Adults (S-TOFHLA). 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.

In chapter 4 we explored experiences among Papuans living with HIV in obtaining ART and in coping to adhere to treatment in a qualitative study interviewing patients and health care providers. We did a qualitative study to explore the experiences to be on ART in five customary areas in Papua. Organization of care, healthcare providers (HCP’s), social support, and personal reasons were important themes. We found that the source of stigma can be from family, community and HCPs. 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.

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In chapter 5 we explored the pharmacist’s role in HIV care by investigating the level of HIV treatment knowledge, empathy, and HIV stigma of pharmacy students and pharmacists working with PLHIV in Indonesia. We conducted a survey of hospital pharmacists working with PLHIV within 33 provinces and final-year pharmacy students of universities in Indonesia. 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 stigma.

This thesis shows a robust approach to helping PLHIV. 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. Stigma 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.

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SAMENVATTING

De hiv-prevalentie in Indonesië ligt tussen 0.1 en 2%. Recente gegevens laten zien dat het sterftecijfer en de hiv-prevalentie in Indonesië blijven toenemen terwijl die in andere landen in Azië en de Stille Oceaan zijn afgenomen. Ondanks dat de hiv-prevalentie in het grootste deel van Indonesië kleiner is dan in India of Thailand zijn er probleemgebieden. In de provincies Papua en West-Papua worden besmettingscijfers geschat op wel 2.3% van de bevolking in de leeftijdsgroep 15-49 jaar.

Deze thesis richt zich op het onderzoeken van de ervaringen van mensen met hiv (PLHIV, People Living with HIV/AIDS) die antiretrovirale therapie (ART) ondergingen in Indonesië. In het bijzonder onderzochten we de factoren die geassocieerd zijn met het regelmatig bezoeken van voorlichting bij de ART-behandeling, de therapietrouw van ART, de factoren die de therapietrouw beïnvloeden en het niveau van gezondheidsvaardigheden. Ten slotte hebben we ook de rol van apothekers in de hiv-zorg in Indonesië onderzocht.

In hoofdstuk 2 focussen we ons op het identificeren van belemmerende en bevorderen faktoren van het bijwonen van hiv-voorlichtingen in een stedelijk gebied van Indonesië. We hebben een cross-sectonele studie uitgevoerd, door middel van een papieren enquête gehouden onder patiënten die een ART-behandeling ondergingen bij een polikliniek van een verwijzingsziekenhuis in Jakarta. Leeftijd, comorbiditeit, seksuele geaardheid, arbeidsstatus en afstand tot het ziekenhuis werden geassocieerd met regelmatige bijwonen van voorlichting. Dit onderzoek suggereert dat de service van voorlichting aan patienten moet worden aangepast om te zorgen dat de voorlichting dichtbij genoeg is en geschikt is voor patiënten die

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ouder zijn, tegelijk andere aandoeningen hebben, of lid zijn van een minderheid. Het toespitsen van de voorlichting op deze groepen zou de regelmatige bijwoning kunnen verbeteren.

In hoofdstuk 3 bepaalden we de mate van therapietrouw en onderzochten we of stigma, overtuigingen over medicijnen en sociaal demografische kenmerken inclusief etniciteit, geassocieerd zijn met therapietrouw onder PLHIV in Papoea, Indonesië. Dit hoofdstuk onderzocht ook hoe gezondheidsvaardig PLHIV in Indonesië zijn en stelt de associatie tussen medicijnkarakteristieken, medicijnovertuigingen, stigma en gezondheidsvaardigheden vast. Een cross-sectionele enquête werd uitgevoerd vanuit twee poliklinieken op Papoea, Indonesië. Hoewel 65.9% van de deelnemers therapietrouw waren bleken de Papoease etniciteit en het creëren van sociale afstand geassocieerd te zijn met therapieontrouw. Voor deze groep zouden gerichte interventies moeten worden ontwikkeld om de therapietrouw te verbeteren. Bovendien bleek uit een gezondheidsvaardighedentest voor volwassenen (S-TOFHLA, Short version Test of Functional Health Literacy in Adults) dat een derde van de deelnemers over een laag niveau van gezondheidsvaardigheden beschikte. We ontdekten dat het gebruik van medicatie in een vaste combinatie, ondersteuning bij het gebruik van medicijnen en geloof in het overmatig gebruik of in het gevaar van medicijnen geassocieerd was met een laag niveau van gezondheidsvaardigheden.

Hoofdstuk 4 onderzocht door kwalitatieve interviews met patiënten en zorgverleners de ervaringen van Papoease PLHIV bij het verkrijgen van ART en bij het omgaan met therapietrouw. We hebben in 5 regio’s in Papua kwalitatief onderzoek gedaan naar de ervaringen van patiënten aan ART. De organisaties van zorg, zorgverleners, sociale

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ondersteuning en persoonlijke redenen waren belangrijke thema’s. We hebben ontdekt dat mogelijke bronnen van stigma familie, gemeenschap en zorgverleners kunnen zijn. Verder bleken praktische problemen zoals vervoer een rol te spelen vanwege de grote afstanden. Ondanks gratis toegang tot ART blijken Papoease PLHIV moeite te hebben met in behandeling te blijven.

Hoofdstuk 5 bekijkt de rol van de apotheker in hiv-behandeling door het onderzoeken van het hiv-behandelingskennisniveau, empathie en hiv-stigma van farmacie studenten en apothekers die werken met PLHIV in Indonesië. We hielden een enquête onder ziekenhuisapothekers die werken met PLHIV in 33 provincies en laatstejaars farmacie studenten van universiteiten in Indonesië. We ontdekten dat zowel empathie, kennis van hiv-behandelingen en het bereidheidsniveau om PLHIV te adviseren negatief geassocieerd zijn met stigma. Apotheker zijn bleek positief geassocieerd te zijn met stigma.

Deze thesis laat een robuuste benadering voor het helpen van PLHIV zien. Therapietrouw blijft een probleem voor PLHIV, vooral in Papoea. Om klinische uitkomsten te verbeteren zijn initiatieven nodig om therapietrouw te verbeteren die passen bij de lokale situatie. Problemen met de infrastructuur, transport, communicatie en gemeenschappelijke waarden maken de situatie komplex. Verhogen van de beschikbaarheid van ART en medicijnen dichter bij PLHIV te brengen zijn onvoldoende om het hiv probleem op te lossen, in het bijzonder in Papoea waar het gevoel gestigmatiseerd te zijn groot is. Destigmatisering moet prioriteit hebben om de gezondheidszorg van PLHIV te verbeteren. Het verbeteren van het farmaceutische onderwijsprogramma zodat apothekers betere zorg kunnen bieden aan PLHIV in Indonesië zou een belangrijke stap vooruit zijn.

Acknowledgements-Dankwoord

“Ik vermag alle dingen door Christus, Die mij kracht geeft” (Filippensen 4:13)

Almost 5 years ago was the first time I landed in Netherlands. Many expectations were built based on other’s insights about Netherlands. How life would be nice and independent was the first foolish I made. “Het is trouwen en lieven” and life teaches me to keep faith on me. Something that I have never done before. I will bring all memories, ups and downs, in a special place in my heart.

This PhD dissertation would never have finished without the support and guidance of several people, through the joy and difficult times. I realized that I had an excellent academic atmosphere and clear direction from my supervisors to complete my PhD.

The first and ultimate thank I give to Jesus Christ, who created me to be the strongest woman who I have never known before. You have stood beside me, and never let me destroy myself because my stupidity to pursue this PhD. Your persistence to keep me alive that shows me everything is possible to be reached as long as I believe to myself.

Prof Katja Taxis, let me call you Katja at the first time. I still remember when I met you for the first time after one drama in my life happened and almost destroyed me until I did not know who I was. Your kindness to supervise me for almost 3.5 years has shown me that what a teacher should be to their students. Next, I am enjoying being your student. Since the first time we met, you have made a good impression with your personality. I did not know what

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ouder zijn, tegelijk andere aandoeningen hebben, of lid zijn van een minderheid. Het toespitsen van de voorlichting op deze groepen zou de regelmatige bijwoning kunnen verbeteren.

In hoofdstuk 3 bepaalden we de mate van therapietrouw en onderzochten we of stigma, overtuigingen over medicijnen en sociaal demografische kenmerken inclusief etniciteit, geassocieerd zijn met therapietrouw onder PLHIV in Papoea, Indonesië. Dit hoofdstuk onderzocht ook hoe gezondheidsvaardig PLHIV in Indonesië zijn en stelt de associatie tussen medicijnkarakteristieken, medicijnovertuigingen, stigma en gezondheidsvaardigheden vast. Een cross-sectionele enquête werd uitgevoerd vanuit twee poliklinieken op Papoea, Indonesië. Hoewel 65.9% van de deelnemers therapietrouw waren bleken de Papoease etniciteit en het creëren van sociale afstand geassocieerd te zijn met therapieontrouw. Voor deze groep zouden gerichte interventies moeten worden ontwikkeld om de therapietrouw te verbeteren. Bovendien bleek uit een gezondheidsvaardighedentest voor volwassenen (S-TOFHLA, Short version Test of Functional Health Literacy in Adults) dat een derde van de deelnemers over een laag niveau van gezondheidsvaardigheden beschikte. We ontdekten dat het gebruik van medicatie in een vaste combinatie, ondersteuning bij het gebruik van medicijnen en geloof in het overmatig gebruik of in het gevaar van medicijnen geassocieerd was met een laag niveau van gezondheidsvaardigheden.

Hoofdstuk 4 onderzocht door kwalitatieve interviews met patiënten en zorgverleners de ervaringen van Papoease PLHIV bij het verkrijgen van ART en bij het omgaan met therapietrouw. We hebben in 5 regio’s in Papua kwalitatief onderzoek gedaan naar de ervaringen van patiënten aan ART. De organisaties van zorg, zorgverleners, sociale

141

strength to drive you to accept me as your PhD student. I think you know what would be happened to supervise a dummy student like me, but you did. Sometimes you let me free to do my research, but you really know when you must bring me back to on my track. Beste Katja, I believe there is no coincidence in this life. Thank you for giving me an example not a theory 141to be a good person as well as a good supervisor. I believe my ultimate God sends you to help me through ups and downs in Netherlands. I always admire how you supervise a student. I could never say, accepting thank you. I hope that you will travel more often to Indonesia and I will show you my Raja Ampat in the future. I wish you all the best and also for your family.

Prof Bob Wilffert, thank you to be my second promotor. We don’t have so much time to discuss my projects but how you tried to learn some words in Bahasa Indonesia, I appreciated that.

Jurjen, a giant friend with a giant heart, thank you for lending me your hands to take me out of disaster. Since the first time I met you, time can never change you as a good person in my eyes. Pepijn thank for reminding me that I was in a nadir point; the only thing I could do was stand up. Samiksha, my beautiful Nepalese girl, our relation seems so bizarre. At the time we made no contact for several months but when we meet again the distances would be disappeared instantly. Thank for accepting me as I am. There is no matter how I am not famous as you are.

Ivan Surya Pradipta, thank for helping me in pursuing this PhD. You are part of my support system; I can never stand without your supports today.

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Pak Reint, and Ibu Dineke, I was astonished when you picked me up from Groningen station and brought me to Wedde. I have never seen a beautiful house like yours, and I enjoyed living there more than 2 months! You are my first friends in Netherland and it would always be. Gerard and Marian, you are a nice picture of Netherlanders. At the first time I met you, I thought all Netherlanders are as nice as you are. Lending hands and accepting me, that made me stronger to live alone in Netherlands. Thank for your kindness.

Fajri and Abrham, thank you very much for accepting my offer to be my paranymphs. Several years we spent together, sharing food and stupid topics in Room 3214.450, the best place in Antonius Deusinglaan 1. Our talks seemed so weird but you are my best roommates that I have ever had.

My life in Groningen would not have been as easy and comfortable like home without assistance from the Indonesian community. I would like to express my special thanks to Silvy, Marcy, and Sofa thank to lend your hands anytime when I was on trouble. Thank you Akbar, Yuan, Christian, Ci, Linda, Tia, Nelly, Wandi, Khairul, Afifah, and Taichi, for being nice colleagues for some years. I miss our togetherness. Thank you for the beautiful moment during my rollercoaster life.

Thank to Jannie, and Bert to helping me in handling administration issues in our departments. I have never had worries when I had problem with Dutch language.

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Thank to all my co-authors, Dyah, Atiqul, Bas, Yugo, Elmi, Ari Probandari, Christiantie Effendy, Satibi, Kristina for giving me challenges to prove my studies are worthy.

Thank to Mbak Ima, Mala, Frans, Mas Ronny, Mbak Erna, Tania, Bang Lucas-Bu Elsa, Om Yon-Tante Indah, Pak Petrus, Kak Rosbina, Bu Tuti to be my second home, to feel that Indonesia is surrounding me.

Asih, and Yabu, thank for 25 years friendship and you have successfully made me stressed when asking me when this pursue will end. Thank to my colleague in University of Cenderawasih; Elsye, Eni, Rani, Eva and Bunda Ve who have been concerned my conditions since I have been here.

Thank you Hariman, Katrin, Indon, Benk, Kak Nona, Abang Robert, and Mamat as my support systems in Indonesia who have never doubted that this degree will be in my hand.

Thank to my second family, Pap-Mam, Alex, Michelin, Roland, Ayla, Glen, Steijn and Collin. Thank for teaching me how to be a Netherlander and accepting me as part of your family.

Thank to my second live, Leven Sianturi, the last our meeting brought me to the lowest point of my life. Since then, I have promised to make you proud of me. It is difficult to hold my promises until we meet again in eternal life. I do love you and I hope you are smiling at me

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now. Mam, thank you for letting me to be myself. Pap thought me how to make dreams, and you, Mam teach me how to make the dreams come true.

Lieve Gerard, since I met you I have never doubted that your heart belongs to me. You are my enemy, my chef, my tough reviewer, and my best friend. I am happy to have you in my life. You really understand that you always come second after I put my patients as my first priority and stealing most my time. You show me that I can be free as a bird and wherever I go there is always a place to call home. Thank you Lieve.

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International Publications and Presentations

Pane M, Sianturi EI, Kong YMF, Bautista P, Herlina, Taxis K. Factors associated with regular counselling attendance of HIV outpatients of a national referral hospital in Jakarta, Indonesia: a cross sectional study, BMC Public Health (2018); 18(1), 6 p., 1030.

Sianturi, EI, Perwitasari DA, Islam MA, Taxis, K. The association between ethnicity, stigma, beliefs about medicines and adherence in people living with HIV in a rural area in Indonesia, BMC Public Health (2019); 19 (1), 8 p., 55.

• Oral Presentation at the European Drug Utilisation Research Group-Conference, 15-17 November 2017, Glasgow, Scotland

Sianturi, EI, Perwitasari, DA, Soltief, Islam, MdA, Geboers, B, Taxis, K.Health Literacy of People Living with HIV in a Rural Area in Indonesia: a cross-sectional study, submitted Sianturi, EI, Latifah E, Probandari A, Effendy C, Taxis K.The daily struggle to take antiretrovirals: a qualitative study in Papuans living with HIV and their healthcare providers, submitted.

Sianturi, EI, Latifah E, Pane M, Perwitasari DA, Satibi, Kristina SA, Hastuti EB, Pavlovich J, Taxis K. Knowledge, Empathy, and the willingness to counsel HIV patients among Indonesian pharmacists: a national survey of stigma, submitted

• Oral Presentation at ICPAPS-ASEAN PharmNet Conference, 14-15 November 2019, Yogyakarta, Indonesia

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C

Clarissa Elfride Irawati Sianturi was born on 10 June 1974 in Jakarta to Leven Sianturi and Shinta Manurung, a former teacher. She was raised in Jakarta and since she was a teenager, she was interested working with children on the street and sex workers. She moved to Yogyakarta to continue study in Universitas Gadjah Mada at Pharmacy Department. Since 2000, she worked as a hospital and community pharmacist in Central Java, Kalimantan, before moved to Cambodia. She has continued working with HIV since 2009 and introduced pharmacist role in helping PLHIV with home visit and social supports. She moved to Papua to fulfill her desire working in conflict area. She worked as a volunteer at the Jayapura Support Group, and clinical pharmacy in VCT Hospital Dok II Jayapura. She split her time to be a lecturer in University of Cenderawasih. Her interests to attract attentions that Papuans living with HIV need helps was a main goal to pursue her PhD in University of Groningen. She has long recognized that importance of local evidences to show pharmacist can help PLHIV in many ways.