Patient Perspectives on Reasons for Failure to Initiate Antiretroviral Treatment in Mozambique: A Call for Compassionate Counseling

Abstract

To the Editor,

Although antiretroviral treatment (ART) in Mozambique is now available to millions of patients, studies demonstrate significant attrition at every level of the HIV care cascade.¹ At an urban health center in Beira, Mozambique, only 55% of ART-eligible patients (CD4 < 350) actually initiated treatment within 6 months of diagnosis.² Identifying reasons for this drop-off is crucial to improving quality of care delivery. Retrospective studies in sub-Saharan Africa have identified risk factors associated with loss to follow-up in the pre-ART period, including male sex, low CD4 at diagnosis, and low socioeconomic status.³ However, patient perspectives are largely unknown. Our study sought to identify reasons for failure to initiate ART as perceived by patients receiving HIV care at an urban health center in Mozambique.

This study was conducted from May to June 2015 at the São Lucas Health Center in Beira, Mozambique. This government-funded primary care clinic is affiliated with the Catholic University of Mozambique (UCM) in collaboration with the University of Pittsburgh. Eligible patients were HIV-infected adults ≥18 years of age receiving ART or pre-ART care at São Lucas. Goal sample size was 50 participants. Patients were invited to participate while waiting for their clinic appointment or for medication dispensation. The surveys were conducted in Portuguese by L.M., a Mozambican medical student. Participants were asked their age, sex, time since HIV diagnosis, ART status, and the following open-ended questions:

1. Why do so many patients who are eligible not start ART?

2. How can health professionals encourage patients to start ART?

3. How can we improve care (at the clinic)?

Participant responses were analyzed for themes and coded accordingly. Median, simple percentages, and interquartile ranges (IQRs) were calculated for baseline characteristics. This project was deemed to be a Quality Improvement study not requiring formal consent by the Institutional Review Board at the University of Pittsburgh.

Fifty-eight patients were approached, of whom 52 agreed to be interviewed. Three patients who completed the survey did not meet inclusion criteria, so 49 were included in the final analysis. As given in Table 1, the majority of participants were women on ART. Most had been diagnosed with HIV within the past 4 years. A majority of participants responded to questions with two to four word answers. Table 2 provides a breakdown of answers to each survey question grouped by theme, along with participant quotations.

Table 1.

Participant Characteristics (n = 49)

Characteristic	Median/frequency	IQR
Age (years)	42	30.5–46.5
Time since HIV diagnosis (years)	2.0	1.0–3.5
Sex^a
Men	17 (35%)	—
Women	29 (59%)	—
Medication status^b
Pre-ART	11 (22%)	—
On ART	38 (78%)	—

Three data points missing.

Four data points missing.

ART, antiretroviral treatment; IQR, interquartile range.

Table 2.

Participant Responses to Open-Ended Questions, Grouped by Theme

Question	Responses (grouped by theme)	Frequency (%)	Participant comments
1. Why do so many patients who are eligible not start ART?	Shame	13 (27)	“Ashamed to be seen by neighbors”
			“Ashamed of parents (finding out)”
	Denial	12 (25)	“They don't accept/believe (status) because they have good sexual behavior”
	Fear of illness	9 (18)	“They are afraid to live with HIV, so they prefer to not accept the result.”
	Mistrust of doctors	6 (12)	“Think that (health) professionals are lying”
			“Prefer traditional healer over doctor”
			“Fear of being insulted by doctors”
	Medication side effects	5 (10)	“Afraid of hunger that pills cause”
	Ignorance, unaware	5 (10)	“Ignorance,” “They don't think”
	Do not value life	5 (10)	“They don't know the value of life”
	Miscellaneous	5 (10)	“Anger,” “Devil on their mind,” “long lines,” “lack of clear explanations,” “distance”
2. How can health professionals encourage patients to start ART?	Provide education and counseling	25 (51)	“Counsel on risks of not complying”
			“Explain that traditional healers don't cure AIDS”
			“Encourage patients to accept their disease”
	Home visits	12 (25)	“Visit home and find out if they are following up”
	Compassionate counseling style	10 (20)	“Have patience in explaining”
			“Speak with love/affection (carinho)”
	Follow-up reminders	3 (6)	“Call patients to return,” “Invite to come back”
	Rapid test results	2 (4)	“Accelerate test results”
	Miscellaneous	4 (8)	“Depends on each case,” “I don't know”
			“Leave those that don't want (to accept diagnosis) alone because it is their own life”
3. How can we improve care (at the clinic)?	No change needed	24 (49)	“Everything is good and I feel good in this hospital”
	Provide food basket	11 (22)	“Give food because the pills are strong”
	Compassionate care	8 (16)	“Be loving, patient, and affectionate”
			“Be understanding”
	Open earlier	8 (16)	“Open the clinic early so patients don't give up”
	Speed up visits	5 (10)	“Attend to patients rapidly”
	Miscellaneous	4 (8)	“Have patience with giving medications to patients who work far away” (longer supply)

ART, antiretroviral treatment.

The most commonly identified reason for not starting HIV medications was shame (27%), specifically related to neighbors or parents finding out the diagnosis, or being seen in the clinic or taking medications. Fear and denial were also commonly cited (18% and 25%, respectively): “They are afraid to live with HIV, so they prefer to not accept the result.” Some felt patients may be ignorant or unaware of the disease (10%) or did not value their own life (10%). Fear of medication side effects was noted by 10% of patients, specifically that medications cause hunger and cannot be mixed with alcohol. Health system issues, including mistrust of health professionals, preference for traditional healer, and long waiting lines, were also mentioned.

A majority of participants (51%) recommended increased counseling as a way of encouraging patients to start ART. Most commonly cited topics for counseling were risks of HIV (eight patients) and medication adherence (four patients). One participant suggested: “Explain that traditional healers don't cure AIDS.” Home visits were suggested by 12 participants (25%): “Visit these patients (at home) to understand (them) better.” In addition, participants felt that health professionals should approach patients with more love, patience, and persistence (20%).

Nearly half (47%) of all patients felt that the services at the clinic were good and no improvement was needed. Many patients suggested providing food basket (22%) because “the medications are strong.” Many patients wished the clinic would open earlier (16%) and that waiting times could be shortened (10%), “so that patients don't give up.” Others (16%) noted that patients should be treated with more patience and “carinho” (love/affection in Portuguese).

The results of our study suggest that shame and stigma remain powerful barriers to HIV care in Mozambique. In contrast, a study from the neighboring province of Zambezia found that only 1 out of 20 patients lost to follow-up identified shame as a cause for their attrition.⁴ Most patients instead cited logistics or concerns about quality of care. We attribute this difference to the fact that that patients may be reluctant to label themselves as experiencing shame, fear, or denial but more readily identify this sense of stigma in others and the community at large. Indeed, a majority of Zambezia participants had not disclosed their status to family members and felt that their community rejected HIV-positive persons, supporting our findings that stigma remains a powerful factor.

Another important theme that emerged was patients' desire for more compassionate, personalized clinical services. In another study from Mozambique, patients with HIV were less likely to describe health providers as sources of emotional and informational support, relying instead on friends and family.⁵ This finding concords with a focus-group study from Zambezia, Mozambique, where community members cited poor treatment by clinic staff as a reason for failure to follow-up after ART initiation.⁶ Participants in our study specifically requested emotional support from healthcare professionals, using words such as “patience” and “carinho” (affection/love) to describe how patients should be treated. Patients and healthcare workers in Mozambique often come from different socioeconomic classes and may even speak different languages, which may make compassionate communication more difficult. A training module in effective pre- and post-test counseling for HIV has been developed for resident physicians in the United States, and could be adapted to other settings and healthcare workers.⁷

Many patients suggested that the clinic provide food baskets because “the medications are strong.” Unfortunately, food insecurity is endemic in Mozambique where 55% of the population lives below the poverty level.⁸ Patients are often faced with difficult decisions: attending clinic appointments means a lost day of wages, resulting in less food for their family and less food to balance the nausea and hunger associated with ART. A study from Zambia found that food supplementation was associated with increased adherence to ART (RR 1.5).⁹ However, providing food can be very costly, with one study in the Sofala province of Mozambique estimating a cost of $288 per patient for 3 months of food supplementation.¹⁰ Government-funded clinics do not have the resources to provide this type of coverage. Another practical request was that the clinic be open earlier with shorter wait times, “so that patients don't give up.” Long clinic lines and missed wages were also described as barriers to care in interviews with ART patients in a variety of sites in sub-Saharan Africa.¹¹ Home-based services were also requested, which have proven effective in Kwa-Zulu Natal, achieving an ART initiation rate of 86% in one study.¹² Although clinics may be limited in expanding programming by financial constraints, small modifications in schedule or medication dispensation (3 months rather than 1 month) may significantly ease burdens on patients and encourage ART initiation.

These results are most applicable to the São Lucas patient population and may not be generalizable. Further, the patients interviewed were actively engaged in HIV care, raising the possibility that their opinions may not reflect the situation of those who are lost to follow-up. Our sample size was inadequate to allow for analysis of responses by gender or ART status, which may have provided additional insights.

In conclusion, patients at the São Lucas Health Center identified shame, denial, and fear as the most important reasons that patients diagnosed with HIV fail to initiate ART. They recommended compassionate counseling, home visits, food baskets, and more convenient medication pick-up as a way to improve patient care. Although financial constraints may limit implementation of some of these measures, we propose that empathy training of healthcare workers may be one way to make patients feel comforted, safe, valued, and willing to return for treatment.

Footnotes

Acknowledgments

We would like to thank the patients and staff of the São Lucas Health Center for making this study possible. This study received no funding.

Author Disclosure Statement

No competing financial interests exist.

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