Caretakers' barriers to pediatric antiretroviral therapy adherence in Vietnam – A qualitative and quantitative study

Caretakers' barriers to pediatric antiretroviral therapy adherence in Vietnam – A qualitative and quantitative study

Applied Nursing Research 35 (2017) 1–5 Contents lists available at ScienceDirect Applied Nursing Research journal homepage: www.elsevier.com/locate/...

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Applied Nursing Research 35 (2017) 1–5

Contents lists available at ScienceDirect

Applied Nursing Research journal homepage: www.elsevier.com/locate/apnr

Caretakers' barriers to pediatric antiretroviral therapy adherence in Vietnam – A qualitative and quantitative study C.T Tran a,b,⁎, T.H Pham a, K.T Tran a, T.K.C Nguyen a, M. Larsson a,b a b

Hanoi Medical University, Vietnam Karolinska Institutet, Sweden

a r t i c l e

i n f o

Article history: Received 4 August 2016 Revised 16 October 2016 Accepted 1 February 2017 Available online xxxx Keywords: Antiretroviral therapy adherence Caretakers' barriers Children

a b s t r a c t Background: Poor antiretroviral therapy (ART) adherence leads to drug resistance and treatment failures. The options for second and third line ART regimens, particularly for pediatric patients, are very limited in low and middle-income countries. HIV-infected children are mostly passive drug-takers, thus caretakers play a very important role in assuring ART adherence. Pediatric ART adherence is still a challenging problem in Vietnam since non-adherence is the major risk factor for treatment failure. Our study explores and measures caretakers' barriers in order to improve pediatric ART adherence in future. Methods: Exploring caretakers' barriers was conducted through a qualitative study with Focus Group Discussion (FGD) on two topics: 1. Current society – family support and difficulties in taking care children under ART; 2. Stigma experience. Based on the finding from the qualitative study a quantitative study measuring caretakers' barriers was conducted through a designed questionnaire. Study methods strictly followed the consolidated criteria with 32-item checklist for interviews and focus groups. Results: In total eight FGDs with 53 participants were conducted. Common caretakers' barriers to children's ART adherence, were financial burden, lack of ART KP (Knowledge-Practice), stigma, depression, shifting caretaker, drug taste and side effects, lack of family support, fixed health check-up schedule and HIV non-disclosure. In the questionnaire study a total of 209 caretakers participated. The most commonly reported caretakers' barriers were: financial burden (144; 69%), KP burden (143; 68%), depression (85; 41%) and stigma (30; 14.8%). Some caretakers' characteristics that significantly associated with reported barriers (p b 0.05). Rural caretakers reported significantly more financial burden (OR = 2.26) and stigma (OR = 3.53) than urban. Caretakers with under high school level education reported significantly more financial burdens (OR = 2.08) and stigma (OR = 4.15) compared to caretakers with high school education or over. Conclusion: Financial burden, KP burden, depression and stigma were common reported caretakers' barriers to pediatric ART adherence. Family residence, caretaker's education level and job were considered as the key factors determining caretakers' barriers related to financial burden and stigma. These findings may be important for policy makers and researchers in order to develop effective interventions regarding to caretakers' burdens and associated factors. Furthermore, a tool for nurses in monitoring caretakers' barriers to pediatric ART adherence was developed first with FDG, and then interview questionnaire. This tool could be applied and modified easily in any pediatric ART clinic settings in accordance to economic, social and cultural circumstances. © 2017 Elsevier Inc. All rights reserved.

1. Background HIV /AIDS epidemic is still a burden, especially in resource-limited settings. In the world, there were 36,9 million people living with HIV and around 2 million people were newly infected with HIV and 1.2 million people died of AIDS-related illnesses in 2014 (UNICEF report, 2015). In Vietnam 230,000 people were living with HIV in 2015 (Vietnam Administration for AIDS Control: Report, 2015). ⁎ Corresponding author at: Hanoi Medical University, Vietnam. E-mail address: [email protected] (C.T. Tran).

http://dx.doi.org/10.1016/j.apnr.2017.02.016 0897-1897/© 2017 Elsevier Inc. All rights reserved.

Pediatric ART adherence is still a challenging problem in Vietnam since non-adherence is the major factor for ART first line treatment failure in children (V.T. An, 2011). ART adherence in pediatric patients is different depending method of assessment; highest when interviewing caretakers but lower when analyzing patients' records (M.D.A. Nhu, Diep, & Khanh, 2009). Caretakers' difficulties are very diverse when depending on children's status such as age, health status; psychology; or on their own financial capacity (J. Haberer & Mellins, 2009). In Vietnam, caretakers' barriers to pediatric ART adherence have not been explored by any qualitative and/or quantitative studies. Our study aims to explore

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and measure the caretakers' challenges and barriers in taking care HIVinfected children during ART.

Table 1 Demographic characteristics of caretakers. Caretakers' characteristic

2. Methods 2.1. Study settings The study was conducted in 2014–2015 at the HIV/AIDS out-patient clinic (OPC) in 3 main pediatric hospitals in Vietnam. Vietnam National Children Hospital manages HIV-infected children from the northern regions, Hanoi and surrounding provinces. Children's hospital 1 and 2 manage patients from the southern areas, Ho Chi Minh City and surroundings. 2.2. Study method The consolidated criteria of 32-item checklist for interviews and focus groups were strictly applied in this study. The two topics [1. Current society – family supports and difficulties in relation to taking care of children with ART; 2. Stigma experience] were mentioned in FGD (see Appendix 1). The number of FGDs was determined by the data saturation point i.e. no other ideas obtained.

Sex Male Female Age ≤29 30–39 ≥40 Job Employed Unemployed HIV status Positive Negative Educational level Under high school High school or above Relationship to the child Biological parents Others Family residence Urban area Rural area a

53 caretakers [n (%)]

209 caretakers [n (%)]

8 (15.1) 45 (84.9)

32 (15.3) 177 (84.7)

23 (43.4) 12 (22.6) 18 (34.0)

34 (16.3) 115 (55.0) 60 (28.7)

24 (45.3) 29 (54.7)

166 (79.4) 43 (20.6)

28 (52.8) 25 (47.2)

146 (69.9) 63 (30.1)

39 (73.6) 14 (26.4)

128 (61.3) 81 (38.7)

31 (58.5) 22 (41.5)

134 (64.1) 75 (35.9)

n/aa n/aa

90 (43.1) 119 (56.9)

n/a: not available.

2.3. Participant enrollment In qualitative study, all caretakers arriving at the OPC on every Tuesday from 8 to 9 am were asked to participate in the study and recruited after giving consent to participate. The number of participants for each FGD was from 6 to 8 to assure the engagement of all participants. There were in total 53 caretakers joining the 8 FGDs. FGDs were conducted once weekly in a private room and lasted 45–60 min. Discussions were conducted in Vietnamese and were moderated by the first author and another trained FGD moderator, both native Vietnamese speakers. In quantitative study, questionnaire interviews, caretakers were enrolled by the same means as the qualitative study (all caretakers arriving at the OPC Tuesday 8 to 9 am were asked to participate in the study and recruited after giving consent), but excluded if they had joined FGD. There were 209 caretakers joining the interviews performed by OPC nurses.

The overarching theme of 2 topics was caretakers' stories on difficulties and society and/or family supports when taking care children under ART adherence and their experiences of HIV-related stigma. Results relating to this theme will be presented in 3 themes: difficulties, risky non-adherence issues and stigma.

2.4. Data collection and analysis

The OPC is located in the city center. Meanwhile, most caretakers live in rural areas, so they are facing many difficulties to arrange transport to the OPC, including high travel cost and time consuming losing time for work casing decreased income. Furthermore, health check-up schedules are fixed and mostly on school days, so some children are not able to present at the OPC for health check-up and receiving drugs, in order to get the medication the children need to be present at the OPC visit.

Qualitative data were recorded and transcripts were processed by content analysis (previously described by Elo & Kyngas, 2008; Graneheim & Lundman, 2004). All the transcripts were read through at least 3 times before coding and categorizing manually and inductively, in stages. The first stage consisted of identifying meaning units, where phrases in the transcript were underlined and then restated in the margins as codes. In second stage, categories were developed from codes and then further compared and merged into a theme. This work was done real-time after each weekly FGD in order to determine the data saturation point. Quantitative data were collected by questionnaire and analyzed by Stata v.12 for proportion of variables and association factors with univariate analysis. 3. Results 3.1. FGD's Of the 53 caretakers (8 men and 45 women), 58% were biological parents and 45% were employed (“employed one” means “one earns money from any kind of employment”). Among them, 53% were HIV positive (see Table 1).

3.1.1. Caretakers' difficulties in relation to taking care children under ART Most caretakers brought up poverty as a major barrier. There was no money support from society, only small amount given from their families. “I'm old, so I can't earn for living. The child's parents are all dead. I'm getting money from his uncle. It's not much, just enough for daily meals. I don't have enough money to buy any drugs for my grandchild. All drugs are being supported by this OPC”. [(A grandma)]

“I live far from this OPC. Sometimes, I'm on my errands near OPC, I want to receive ARV drugs but I can't. I must go back home or school to bring her to OPC. So the most difficulty for me is to receive ARV drugs without my child”. [(A father)]

3.1.2. Risky non-adherence issues Participants who are not primary caretakers stated that they had no ideas on the child's treatment. So they might not have essential knowledge and experience of taking care of children with ART. “His parents died. The hospital sent him to this OPC for treatment. I don't know anything about his disease or his treatment. I just follow OPC instructions to give him drugs daily on time. Whenever he has any symptoms, I bring him to OPC for health check-up”.

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[(A grandma)] Caretakers who must go to work commonly ask for help from other people (a family member or even a neighbor) to take care the child during their working hours. The helpers are not primary caretakers so they might not know the importance of taking drug on time and how to assure the drug dose as well. “I'm living with my niece because her mother died. There are only two of us. When I go to work, I ask for help from the landlord to look after her and give her the first dose in the morning. Luckily, my landlord loves her more when knowing her disease. After work, I give her the second dose in the afternoon”. [(An aunt)]

3.1.3. Stigma experience Most caretakers have no stigma experience since they never let other surrounding people know about their HIV status or the child's disease. They do not want to disclose the HIV status to their children even though they were consulted to join the process of HIV disclosure to their children. “I heard about stigma a lot from other people, so I'm afraid of that. I never let other people know about my HIV status or my child's disease. So I have never faced HIV stigma up to now”. [(A mother)]

3.2. Questionnaire interviews The 3 themes were developed in a designed questionnaire for interviewing caretakers from 3 OPCs with the designed questionnaire (see Appendix 2). Of the 209 caretakers (32 men and 177 women), 64.1% were biological parents and 79.4% were employed (see Table 1). Among them, 69.9% were HIV positive. A high proportion of the study population reported financial and KP burdens (68.9% and 68.4%, respectively). Depression and social stigma were less commonly reported with 40.7% and 14.8%, respectively (see Fig. 1). Some caretakers' characteristics were significantly associated with their reported barriers. Caretakers living in rural areas reported significantly higher proportion financial burdens than those in urban (OR = 2.26, 95% CI 1.24–4.11, p = 0.007). Caretakers' with education under high school level reported significantly higher proportion financial burdens compared to those with high school level or over (OR = 2.08, 95% CI 1.50–4.20, p = 0.02). Regarding stigma, caretakers living in rural areas reported significantly higher proportion than those in urban areas (OR = 3.53, 95% CI 1.36–9.06, p = 0.006). Employed caretakers reported significantly more stigma compared to parents (OR = 4.15,

Fig. 1. Caretakers' main barriers to children's treatment.

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95% CI 0.95–18.2, p = 0.04). For KP burden and depression proportion, caretakers' characteristics had no association or impact (see Table 2). 4. Discussion Many caretakers' barriers to pediatric ART adherence were obtained from FGDs such as financial burden, lack of ART KP (Knowledge-Practice), stigma, depression, shifting caretaker, drug taste and side effects, lack of family support, fixed health check-up schedule and HIV non-disclosure. However, there were only 4 main barriers (Financial burden; KP burden; Depression; Stigma) with high proportion confirmed by the quantitative study. The sample size in quantitative study was larger so it could reduce the bias or the generalization from the small sample size in qualitative study i.e. caretakers' characteristics were more representative. As in 209 caretakers, the proportion of biological parents was 64.1%, which was higher than among the 53 caretakers that participated in the FGS's (58%). The reason for combining qualitative method and quantitative study methods was to assess which of the reported barriers in the FGD's that was most commonly reported also in the questionnaire study. Family income was a major barrier for sustained treatment with ART, which has also been found in other low-income countries (Hlabyago & Ogunbanjo, 2009). Financial burden was the major caretakers' barrier reported by 68.9%. Even though most caretakers were employed they could not earn enough for living, especially those with low education level. A qualitative study in rural Uganda showed similar results including that caretaker’ barriers were mainly lack of resources, the majority working day laborer jobs and often going long periods without employment. ARVs were available free of charge; however, money was necessary for daily life expenses and other aspects of childcare, such as food and school fees, adherence could not always be given priority (Olds, Kiwanuka, Ware, Tsai, & Haberer, 2015). Non-parent caretakers were identified as the key barrier to ART adherence. Daniel Nyogea et al., 2015 found that children living with nonparent caretakers were more likely to have poor adherence compared to children living with their parents (OR = 2.84, 95% CI: 1.04-7.77). Giacomet V found the same that ART adherence in children has been reported better when receiving their medications from parents rather than non-parent caregivers (Giacomet, Albano, Starace, et al., 2003). In our study adherence data were not collected. There were no significant difference in reported barriers between parent and non-parent caretakers' (see Table 2). Poor knowledge of ART among caregivers is associated with poor adherence to ART in children. A study in Northeast Ethiopia found that if the caregiver was knowledgeable about ART treatment, the child was 2.7 times more likely to be adherent to ART [AOR = 2.72(95% CI: 1.82, 7.13)] (Arage, Tessema, & Kassa, 2014). KP burden rate was also reported quite high 68.4% in our study, so it would be a risky of poor ART adherence in Vietnam. This issue was independent to caretakers' factors since there was no association. Hence, it would be solved simply by intensive fresh trainings on ART KP or even KAP for all caretakers. The impact of non-disclosure of HIV to children or other family members was previously found as a significant barrier in handling HIV-infected children and was potential barriers to non-adherence to ART (S Biadgilign, Deribew, Amberbir, & Deribe, 2009). Children who were aware of their HIV status displayed fewer instances of frustration and conflict concerning taking medicines and within the child-caregiver relationship (Fetzer et al., 2011). However, non-disclosure of HIV to children was currently not the main barriers in our study since it was not reported. HIV-related stigma is expressed through feelings as shame and scorned, behaving differently, and fear of transmission (Gaudine, Gien, Thuan, & Dung Do, 2009). Caretakers experienced stigma in our study was low (14.8%) because they were good at dealing stigma by hiding or keeping HIV infection status as a secret or non-HIV disclosure to their children. This issue would be a big risk in future as it was reported

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Table 2 Caretakers' factor proportion to their own barriers. Caretakers' factors Sex Age Family residence Job Education HIV status Relationship

Male Female b40 40 and above Urban Rural Unemployment Employment Under high school High school or above Positive Negative Biological parents Others

Financial burden (+)

KP burden (+)

Depression (+)

Stigma (+)

22 (68.8) 122 (68.9) 99 (66.4) 45 (75.0) 53 (58.9)⁎ 91 (76.3)⁎ 31 (72,1) 113 (68,1) 96 (75.0)⁎⁎ 48 (59.3)⁎⁎

21 (65.6) 122 (68.9) 104 (69.8) 39 (65.0) 61 (67.8) 82 (68.9) 30 (69.8) 113 (68.1) 88 (68.8) 55 (67.9) 44 (69.8) 99 (67.8) 52 (69.3) 91 (67.9)

19 (59.4) 105 (59.3) 87 (58.4) 37 (61.7) 56 (62.2) 68 (57.1) 28 (65.1) 96 (57.8) 77 (60.2) 47 (58.0) 34 (53.9) 90 (61.6) 46 (61.3) 78 (58.2)

5 (15.6) 25 (14.1) 24 (16.1) 6 (10) 6 (6.7)⁎ 24 (20.2)⁎ 2 (4.7)⁎⁎ 28 (16.9)⁎⁎

100 (69.8) 44 (68.5) 89 (73.3) 55 (66.4)

22 (17.2) 8 (9.9) 7 (11.1) 23 (15.8) 7 (9.3) 23 (17.2)

Chi square test, between categories within a group. ⁎ p value b 0.01. ⁎⁎ p value b 0.05.

in many previous studies, such as S Biadgilign et al. found that the impact of non-disclosure of HVI to children or other family members was a significant barrier in handling HIV-infected children and was potential barriers to non-adherence to ART (S Biadgilign et al., 2009); Fetzer BC et al. reported that children who were aware of their HIV status displayed fewer instances of frustration and conflict concerning taking medicines and within the child-caregiver relationship (Fetzer et al., 2011). 4.1. Study limitation Adherence data were not collected in compiling with other data for further analysis to figure out the real impact of caretakers' barriers to pediatric adherence. As this was a rather small study the generalizability of the results might be limited. 5. Conclusion Financial burden, KP burden, depression and stigma are commonly reported caretakers' barriers to pediatric ART adherence. Family residence, caretaker's education level and job were considered as the key factors determining caretakers' barriers related to financial burden and stigma. These findings may of importance for policy makers and/or researchers to develop contextualized interventions targeting caretakers' burdens and associated factors. Furthermore, a tool for nurses in monitoring caretakers' barriers to pediatric ART adherence was developed through the FDG and the interview questionnaire. These tools may be applied and modified easily in any pediatric ART clinic settings according to economic, social and cultural circumstances. This study is the primary step of understanding the country context before launching an intervention project in Vietnam funded by SIDA (Sweden), so these findings will be applied in developing contextualized interventions to improve ART treatment adherence for children in Vietnam. Appendix 1. Focus group discussion GUIDE Moderator: Site: Recording code: Number of participants: Transcriber: Date: Start time:

I am specifically interested in what you think the barriers and facilitators to assure the adherence to ART amongst children are, and your stigma experience. Can you please state your position here: – Please tell me about your relationship with children who receive ART (What is your role)? – Please tell me about your experience in taking care children under ART *Using hint/prompt questions to all participants as following: How do you have your child take ARV? How much do you have to pay for taking care your child daily? Who help you in taking care your child when you go to work? What do you think is the most difficult thing in taking care your child under ART? And any other difficulties that you had faced or you are facing now. How often do you go to this OPC? Have you ever-experienced stigma? What are they? Appendix 2. Interview questionnaire Part 1: Caretaker's information Full name:...................................................................................................... DOB (mm-dd-yy):....../......../................. Sex: 1. Male ☐ 2. Female ☐ (Ask appropriate questions to collect data, stick on the answer. Choose 1 option only) Employment 1. Employed (can earn money) 2. Unemployed (cannot earn money) HIV status 1. Positive 2. Negative Education level 1. Under high school (including illiterate) 2. High school or above Relation to the child 1. Biological parents 2. Others Family residence 1. Urban 2. Rural

Part 2: Caretaker's opinions/answers End time:

Thank you for agreeing to take part in this study. In this group meeting, I am going to ask you some questions about your experience in taking care children with HIV under ART.

1. What is your biggest concern? (Choose 1 answer) a. Financial issue b. Child's health c. Stigma

C.T. Tran et al. / Applied Nursing Research 35 (2017) 1–5 d. Your physical health e. Your mental health f. HIV disclosure g. Other (specify): ........... 2. How often do you get difficulty in finance? a. Never b. Rarely c. Sometimes d. Usually e. Always

References

3. Have you got any difficulties in taking care of your child on ART? a. Yes b. No 4. Which of the following difficulties have you faced in taking care of your child on ART? a. Have not enough knowledge of ART b. Have not enough practice of ART c. Side effects of medications d. Have no private place for the child to take drugs e. Afraid of disclosure HIV status to child f. Nausea and vomit after taking drugs g. Afraid of child getting side effects h. Impact on daily activities i. Too busy to remember of having the child taking drugs on time j. Unhealthy child (no weight gain, malnutrition, sickness…) k. Other (specify): .... 5. Do you think that your life now is stressful? a. Yes b. No 6. In the last week, how often did you feel of anxiety, boredom, anger or loss interest in life? a. Never b. Rarely c. Sometimes d. Usually e. Always

Place: .................................................... Date,........................................ Interviewer's signature: Full name: Caretaker's signature: Full name:

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Time,.............................

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