AIDS PATIENT CARE and STDs Volume 28, Number 11, 2014 ª Mary Ann Liebert, Inc. DOI: 10.1089/apc.2014.0193

The Role of Social Support Among People Living with HIV in Rural Mozambique Beverley Cummings, MPH,1 Sarah A. Gutin, MPH,2 Prafulta Jaiantilal, MSS,1 Della Correia, MD,1 Inacio Malimane, MD,1 and Carol Dawson Rose, PhD, RN, FAAN 2

Abstract

A Positive Health, Dignity, and Prevention framework is being implemented in Mozambique to maintain the health of persons living with HIV (PLHIV) and prevent onward HIV transmission. An important intervention component is psycho-social support. However, coordinating support services has been challenging. Seventy indepth individual interviews were conducted with PLHIV between January and June 2010 in three rural provinces to clarify the receipt and provision of support by PLHIV. Thematic coding and analysis were conducted to identify salient responses. PLHIV reported that the majority of social support received was instrumental, followed by emotional and informational support. Instrumental support included material, medical, and financial assistance. Emotional support was mentioned less frequently and was supplied most by family and friends. PLHIV also received informational support from a variety of sources, the most common being family members. Informational support from health providers was rarely mentioned, but this advice was valued and used to educate others. Although most participants described receiving social support from many sources, there were consistently identified needs. This study revealed that social support is central in the lives of PLHIV and identified areas where social support can be improved to better respond to the needs of PLHIV in the Mozambican context.

Introduction

I

n the absence of antiretroviral therapy (ART) and complementary medical services, the initial response to the HIV epidemic in Mozambique was the provision of palliative care and psycho-social support for gravely ill and dying persons. ART for clinically eligible HIV-infected persons was made available in 2003, and, as of the end of 2012, the Mozambican Ministry of Health (MOH) had enrolled 308,578 persons living with HIV/AIDS (PLHIV) on ART.1,2 This figure represents 41% of the estimated number of PLHIV eligible for ART (defined as a CD4 count < 350), and is considerably less than the overall enrollment percentage in sub-Saharan Africa in the same year (68%) and the achievements in neighboring countries (76% in Malawi, 81% in South Africa, 87% in Swaziland, 86% in Zambia and 85% in Zimbabwe).3 Nevertheless, the availability and expansion of ART throughout Mozambique, funded primarily through the US President’s Emergency Plane for AIDS Relief (PEPFAR) and the Global Fund for HIV, TB and Malaria, has increased the 1 2

number of individuals infected with HIV who are able to begin treatment. A commitment by the MOH to accelerate the availability of ART to eligible PLHIV is expected to greatly increase coverage by the end of 2015.4 This expansion is expected to decrease morbidity and mortality among HIV-infected individuals and to bring improvements in the health and well-being of PLHIV. With the anticipated improvements, there are also new HIV prevention challenges. One unique challenge includes addressing the evolving psycho-social and support needs of PLHIV who no longer face immediate death but who must cope with the reality of living with a transmissible virus and chronic disease. In response to these various challenges, the MOH recently adopted a Positive Health, Dignity, and Prevention framework, known locally as Positive Prevention (PP), as a programmatic approach to better address the prevention and psycho-social support needs of HIV-infected individuals. The goals of Mozambique’s PP intervention are to prevent morbidity among PLHIV and HIV transmission to sexual partners and children while reducing stigma for PLHIV in service settings. Mozambican providers receive a 3-day,

Division of Global HIV/AIDS, Center for Global Health, Centers for Disease Control and Prevention, Mozambique. Department of Community Health Systems, School of Nursing, University of California San Francisco, San Francisco, California.

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SOCIAL SUPPORT IN MOZAMBIQUE

skills-based training to integrate prevention for PLHIV into routine HIV services. Specifically, the PP training focuses on enhancing providers’ capacity to: assess risk and motivate behavior change using prevention counseling; formulate brief prevention and risk reduction messages targeting adherence, partner testing, disclosure, sexual risk and partner reduction, condom negotiation, sexually transmitted infections, family planning/unintended pregnancies, prevention of mother to child transmission, alcohol intake and drug use; and address prevention systematically during subsequent interactions to promote healthy lifestyle choices for PLHIV. An additional component in Mozambique’s PP intervention is linking PLHIV with support services, which is designed to foster supportive environments that are conducive to behavior change and the maintenance of newly adopted behaviors. Support, both in terms of available social services provided by the Government of Mozambique and social support in communities among family and friends of PLHIV, has been difficult to coordinate and ensure, despite the historic importance of support in the global and national response to the HIV epidemic. Social support, which refers to the assistance received through relationships comprising a social network, has been shown to impact short-term and long-term health outcomes positively by moderating the adverse consequences of stress and enhancing coping mechanisms.5,6 Pioneering work conducted by Cassel7 provided the first empirical evidence of the effect of social relationships on health; however, additional empirical studies have consistently documented similar findings of the causal effect of social networks and social support on wellbeing.5,8–10 Many of these studies document that social support increases survival rates and improves the quality of life for chronic illnesses, particularly HIV.10–17 This includes a study conducted by Nachega and colleagues18 that suggests that interventions tailored to relationship factors and facilitating social support may influence adherence outcomes. The defining attributes of social support include four broad categories: emotional support or the provision of empathy, love, trust, and caring; instrumental support or the provision of tangible aid and services that directly assist a person in need; informational support or the provision of advice, suggestions, and information that a person can use to address problems; and appraisal support or the provision of information that is useful for self-evaluation purposes (i.e., feedback and affirmation).5,19,20 These attributes were used in this qualitative study to better understand PLHIV experiences with social support and identify gaps that could be addressed by structured psychosocial programs as part of the PP intervention in Mozambique. Methods

This study was conducted as part of a larger cross-sectional qualitative evaluation to assess the feasibility and acceptability of Mozambique’s PP intervention. It utilized a descriptive, exploratory design to examine types of support available to and provided by PLHIV. Data collection occurred through individual semi-structured interviews conducted with PLHIV who received services at four rural health care centers and a one rural communitybased VCT site where the PP program was being implemented in three provinces of Mozambique (Maputo, Sofala,

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and Zambe´zia). An effort was made to ensure that all of the sites possessed similarities in terms of infrastructure and staffing. PLHIV were recruited by the triage staff at the study sites when they arrived for clinical follow-up visits. The triage staff consecutively asked HIV-positive patients whether they were interested in participating in the study as they registered for services. Recruitment took place on different days of the week and at alternating times of day in order to minimize selection bias. PLHIV were eligible to participate if they selfreported that they were between 18–65 years of age and received on-going HIV care at a PP program site. Before beginning the interviews in a private location at the site, a trained interviewer reviewed the purpose of the evaluation and obtained written informed consent from participants. A standardized guide was used for all interviews and question domains included basic demographics (e.g., age, gender, racial/ethnic background, education, and socioeconomic status); knowledge, attitudes, and beliefs about HIV/ AIDS, PLHIV, and risk behaviors (e.g., sexual activities and substance use); and the types and quantity of HIV prevention messages received during clinical visits. No identifiable information was obtained during data collection. Interviews were conducted either in Portuguese or in the local language of the region (Changana, Sena, Ndau, or Chuabo), depending on the preference of the participant. All interviews were digitally recorded with the permission of participants. Digital audio recordings were transcribed verbatim (if in Portuguese) or translated into Portuguese and then transcribed in Portuguese (if in Sena, Changana, Ndau, or Chuabo). All transcripts were then translated into English. Twenty-five percent of the transcripts were back translated to verify the accuracy of the transcriptions. Transcribed data were imported into Atlas.ti (Berlin, Germany) qualitative analysis software for open coding. To ensure consistency during the analysis, an initial codebook was developed with universal definitions for each code. This initial codebook was broadened and refined to incorporate emerging themes and concepts, resulting in the final codebook used by the team. Fifteen percent of the transcripts were double coded to ensure inter-coder reliability of 90% or greater. Thematic analysis of the resulting coded data allowed for the inclusion of contextual factors that might explain PLHIV’s social support experiences in Mozambique. Thematic concepts expressed by a majority of participants or subgroups of participants were defined as salient. Additionally, social support constructs were used to assist with organizing the analysis in an effort to fully explore all aspects of social support, as subjectively experienced by the participants. Results are presented using the defining attributes of social support in the order of the most salient among PLHIV to the least. Given the similarity and potential overlap between informational and appraisal support, these attributes were combined in this analysis. Variance in responses by key characteristics such as province of residence, gender, age, and disclosure of HIV serostatus were explored during the analysis. When differences in support by key characteristics were noted within the sample, this is presented. Ethical approval for the study was granted by the Bioethics Committee for Health at the Mozambican Ministry of Health and the Committee on Human Research at the University of California, San Francisco.

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CUMMINGS ET AL.

Results

Between January and June 2010, 70 individual interviews were conducted with PLHIV enrolled as patients at PP program sites. PLHIV who participated in this study were predominately female (75%) and had a median age of 37 years (range = 18–65 years). Complete demographic characteristics of participants are presented in Table 1. Instrumental support

Assistance with a specific problem or issue, or instrumental support, was the most frequently mentioned form of support received and provided by participants. There was a wide range of instrumental support reported including, in the following order, material support (e.g., food, housing, and transportation), medical support (e.g., accessing ARV and other medications), and financial support, as summarized in Table 2. Most instrumental support was provided by the

Table 1. PLHIV Demographics

Characteristic Gender Female Male Age Under 30 30–39 40 + Unknown Marital status Married Single Widowed Divorced Undisclosed Number of children 0 1 2 3 4 or more Undisclosed Occupation Farmer/ ‘‘Machamba’’ worker Market vendor Domestic worker Teacher or student Unemployed Other/undisclosed Language Changana Sena/Ndau Portuguese Chuabo Location Namaacha Health Center (Maputo) Beluluane VCT Center (Maputo) Mafambisse Health Center (Sofala) Inhassunge Health Center (Zambe´zia) Namacurra Health Center (Zambe´zia)

Total number of patients N = 70 (%) 52 (74.3) 18 (25.7) 25 17 27 1

(35.7) (24.3) (38.6) (1.4)

33 18 8 1 10

(47.1) (25.7) (11.4) (1.4) (14.3)

5 14 14 14 18 5

(7.1) (20.0) (20.0) (20.0) (25.7) (7.1)

17 5 12 3 14 19

(24.3) (7.1) (17.1) (4.3) (20.0) (27.2)

15 3 41 10

(21.7) (4.4) (59.4) (14.5)

12 14 23 11 10

(17.1) (20.0) (32.9) (15.7) (14.3)

family members of PLHIV. The majority of participants described receiving food. In the illustrative quote presented below, a 42-year-old female from Zambe´zia Province received food from her young nieces. My nieces support me.They are orphans [and] are 11-yearold children (twins).They farm, grow vegetables and sell them, [and] they go to the market and buy shrimp. And that’s it; we eat. We live like that.I was the one to support them, then when I became ill, they support me.—Female, 42 years old, Zambe´zia Province

Transportation, particularly to get to health facilities that are often located long distances from the residences of PLHIV, was also frequently discussed by participants. I had bad diarrhea. I was weak and I only wanted to be in the sun. My nephews, seeing the situation, called my daughter.together they took me to hospital.they insisted and took me to [the hospital].—Female, 54 years old, Maputo Province

A small number of PLHIV reported that they do not receive instrumental support, particularly material support. In these instances, the PLHIV noted that they were actually taking care of themselves or supporting others and that they continue to work, several by selling produce or alcohol. This was observed in both formally employed PLHIV and PLHIV strong enough to continue work in the informal sector. I sell vegetables in the market.After the sale I buy a cup of rice for meals, when I have nothing I go to sleep hungry with my son.—Female, 55 years old, Sofala Province I always manage to scrape together some money. I make drinks and sell them.—Female, 44 years old, Maputo Province I do volunteer work making home visits through Kindlimuka [a PLHIV association] and they give an allowance to be able to support myself.— Female, 35 years old, Maputo Province I support myself from my paycheck because I am a teacher and my wife does not work.—Male, 47 years old, Zambe´zia Province

Beyond the instrumental support that PLHIV receive and that which they provide to their families, one PLHIV described a collective effort to offer financial assistance and transportation to the hospital for a young woman in her community believed to be HIV-positive: With a few neighbors we collected some money and took [the young woman] to the general hospital. She was diagnosed and medicated, but at the moment she is still taking antibiotics to cure opportunistic diseases. Afterwards she will do [ART] because the test result was positive.—Female, 54 years old, Maputo Province

Despite the frequency with which instrumental support was received and provided, there were challenges with obtaining assistance that were experienced by a limited number of PLHIV. The nature of these challenging experiences, which were largely related to HIV stigma and discrimination, is evident in this quote from a 25-year-old female from Maputo Province who described an experience of instrumental support initially provided and later revoked on two occasions because of discrimination and fear within her family. I lived with my dad when I got tested, when I was told that I was HIV positive I told my family.Then my father sent me away from home.I am now living with my grandmother, but now they sent me away from my grandmother’s house because of my mother’s youngest sister.

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Received (family)

Received (family)

Material (food)

Material (transportation)

Financial and material (food, housing and education)

Received (family)

Medical (ART access)

Received (family)

Received (healthcare provider)

Received (family)

Received (healthcare provider)

Material (medical supplies)

Given (other PLHIV)

Received (family)

Support received or given

Type of instrumental support I live with my sister.I am supported by her.it’s not my house so even if I want juice or crackers.it’s hard. But.they give me something to eat and I never went hungry. I was in pain.so my uncle took me to the central hospital of Quelimane.when I got tested the result came out positive for HIV/AIDS. To come here to the clinic, my feet got swollen. I had to find someone to [bring] me here to the hospital..That’s how I was able to come. I try, see if they need a helper, a support, whether it is for transport, to take them to the health center, I do it every once in a while. Even when we need stuff like gloves and other materials, they offer them to us and have helped us when we need it., They have even helped us outside the hospital. He treats me really well, he is not my own father but [my stepfather] treats me well. Even when I was ill he took care of me. Even if I do not come because I am in bed, he takes the card and picks up the medication and tells them that I’m sick. [My sister].accepted it and said, ‘‘That is a disease. I will not refuse, I will help you go pick up the medication.’’ I started my treatment.here and I walked, walked, walked. Money for transportation was tough. I could not comply exactly. I then asked for a transfer because the district already had medication. He transferred me and I went to the hospital. They received me in the same month. [Family members] send money.my father sends money via bread.I live with my brother, and he supports me in school, I live with them.

Illustrative quote

Table 2. Instrumental Support Received and Given by PLHIV

Male, 28 years old, Zambe´zia Province

Male, 49 years old, Maputo Province

Female, 45 years old, Zambe´zia Province

Female, 40 years old, Zambe´zia Province

Female, 44 years old, Zambe´zia Province

Male, 38 years old, Sofala Province

Female, 54 years old, Maputo Province

Male, 32 years old, Zambe´zia Province

Female, 45 years old, Maputo Province

PLHIV demographics

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PLHIV concerns about experiencing stigma and discrimination influences the decision whether to disclose their HIV serostatus; yet disclosure is often necessary for the receipt of social support.21 The effect of disclosure on instrumental support was noted in this study. Those who did not disclose being HIV seropositive were more likely to report supporting others, as was the case for a 52-year-old female from Maputo Province who continues to support her family and has not told her husband about her diagnosis. I live off of contract work, other than that I have nothing, because there is nothing on the farms.my husband also does not work because he is old. I’m the only source of income in the family. I still haven’t told my husband that I’m HIV positive.

An additional challenge evident in these data is the reality that instrumental support provided or offered does not always address immediate needs and that PLHIV in rural Mozambique face multiple structural barriers. The 35-year-old female from Maputo Province working as a peer educator with a PLHIV association described a situation in which she was offered a place to live from her mother but declined it because it was further away from the health facility where she receives HIV care and treatment. [My mother] asked me to go live with her, but I did not accept because she lives far away. And since I always need to go to the hospital, it wasn’t convenient to go live with her.

Emotional support

Emotional support is reassurance and comfort to assist with coping during a difficult situation. For PLHIV adjusting to a recent diagnosis or concerned about rejection or discrimination, receiving an empathetic response can be reinforcing and empowering. One 29-year-old female from Sofala Province indicated that the support her family provided gave her ‘‘strength’’ to initiate ART. Typically, emotional support is the most common form of social support received;20 however, in this study, emotional support was mentioned slightly less frequently than instrumental support by participants. The most frequent emotional support received and given was related to accessing ART, facing an HIV diagnosis/accepting one’s seropositive status and continuing a productive life. Family (parents, children, siblings) and friends provided the majority of emotional support, but emotional support from spouses and sexual partners was also described. Emotional support within couples was primarily reported by PLHIV in concordant relationships and, as a result, the support was reciprocal or bidirectional. A 28-yearold female from Sofala Province described the direct approach used with her husband to request and offer emotional support for the initiation of HIV treatment services: I was not afraid. I went to talk to my husband.We came together, signed, everything. I usually just talk [to him and say], ‘‘Let’s go together.’’

The reliance and emotional strength exhibited within couples is further illustrated by a 31-year-old male from Zambe´zia Province who explained how he and his wife make clinic visits together: [My wife] only gained the courage to be together.she’s always with me and we are always here to do our treatment until we are both done.

CUMMINGS ET AL.

The importance of being connected to a group of persons with similar experiences and giving, as well as receiving emotional support, was acknowledged by some participants. The following illustrative quote from a 28-year-old female from Maputo Province describes the role that support groups play in the emotional well-being and healthy living of PLHIV. I’m here in this group, I don’t feel alone because there are a lot of us, we encourage each other. And we feel happy because we each have our own problems.We have our meetings once a week and they are two hours long which is long enough for a person to talk, get distracted. And that’s why I feel encouraged, I’m not scared. I’m not ashamed to leave here, I don’t even see myself as being sick, I feel good.

Table 3 provides additional examples of PLHIV perceptions of emotional support. Informational/appraisal support

PLHIV received substantial informational/appraisal support, advice to help with decision-making or to evaluate circumstances, from a variety of sources (Table 4 summarizes findings related to informational/appraisal support). The most common source of informational/appraisal support was provided by family members. The topics addressed in these data range from compliance with ARVs to safer sexual practices. Ultimately, the focus of the information provided is on keeping PLHIV healthy as illustrated by a 34-year-old male from Sofala Province who received advice from his family to adhere to treatment and use condoms. [My family members] always say.you have to comply, because that is a risk to life if you do not comply with what is said by the doctors; you’ll die. And you have to use prevention with women. And that is what my family talks about, complying with that.

Wives or female partners, who providers indicated are more likely to test and seek HIV treatment, at times inform their husbands or male partners about HIV and clinical services. One 46-year-old female from Maputo Province shared the experience of telling her husband that she was HIV-positive. Despite fears that he would abandon her, she shared information about her testing experience and what she learned about HIV treatment from providers at the clinic. I was in the hospital that day and there was a lecture where they said that whoever was interested in knowing their condition could take the test.In the medical office I got a little advice and a series of questions in the event that I was positive.They said that if I was positive I wouldn’t have any problems because.they would give me drugs so that I may live longer. I was sad and upset when I got the positive result, but.I went home. I told my husband all [that I learned] and he saw was the need to take the test. He did and came back positive.

Although informational/appraisal support from health care workers and other service providers was mentioned less frequently than information given by family members, it often was the source of knowledge that PLHIV used to educate others, as demonstrated above. PLHIV typically receive information from providers during individual consultations and as a part of group sessions.

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Positive living and ART adherence

Positive living

Given and received (family)

HIV diagnosis/seropositive status and ART access

Received (support group)

Received (support group)

Received (support group)

Given and received (support group)

Received and given (friend)

Received and given (family)

Support received or given

ART access

Emotional support topics When I told [my wife], she did not think much of it, it wasn’t complicated, she just asked that it be a secret between us, and that we continue to do the treatment together, she also needed the treatment, and had been doing it alone. [My girlfriend] said, you see. But now, what are we going to do daddy? I said, there’s no problem, my lady. So what happens now is that from now on, to the hospitals, wherever, we’ll go together.we’ll go together logically. I had a friend who I called as my sponsor so that I could admit myself in the hospital.I asked him to accompany me to the hospital.. From there they tested him and he also was HIV positive. I was a trusted friend, now he is a trusted friend.we went together, and after that, he even thanked me. In this association there are many patients.anyone who feels sick can come here in to unwind and help others morally.In this center we teach each other so that a person does not feel isolated, because having this disease does not mean that you will die soon. .Now we feel more at ease, we are no longer isolated as before.. Coming to this center is good for me, I feel more at ease than if I had gone to the doctor. In my area I was almost alone. I could only open up when I was at my consultations. I was integrated into that group and I felt part of a family, all that anguish vanished, I feel at ease, I have talked a lot and it is good for me. The situation is not that bad. Because they offer counseling.When I come here I see my friends. They are here complying with treatment. I also am complying.

Illustrative quote

Table 3. Emotional Support Received and Given by PLHIV

Female, 37 years old, Sofala Province

Female, 54 years old, Maputo Province

Female, 59 years old, Maputo Province

Female, 28 years old, Maputo Province

Male, 52 years old, Maputo Province

Male, 49 years old, Maputo Province

Male, 38 years old, Sofala Province

PLHIV demographics

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HIV testing

General

Received (family)

Positive living

Given (community)

Given (community)

Received (health care worker)

Received (health care worker)

Received (health care worker)

Received (family)

Support received or given

ART adherence

Topic of informational support I can’t lie, sometimes I mess up and miss the days to get the medication. When I ask my children, because they can read,.they tell me that I already exceeded those days. And after that I go to the hospital right away. [My family] advised me that this disease is this way: it affects a person, you cannot be afraid, you have to do the treatment, you’ll be fine, this will change one day. And I did it, I comply with everything, and I feel good. I was given advice when I was there at Primeiro de Maio [Health Center].they said that I had to reduce my vices, to not drink, to only have one woman, to use condoms and to take the medicine on time. .there also is a .nurse who always gave me advice. She said that when I have problems [or] difficulties, she would [give] me advice and a social worker.I like it. We meet here at the hospital.when we come here they explain, and when we go home, a person keeps in their head that at the hospital they said this, this, etc. Sometimes when I suggest going to the hospital, sometimes they hesitate. Only after they do. the follow-up, or get treatment, that is when they see that finally after all that, I was telling them something good. It was a good path. have talked a lot with people.mostly young people who have returned from neighboring South Africa.[I tell them]go get tested. And then they come to tell me something. They have gone and then [they] come [to] tell me, thank you we were letting ourselves die for fear and shame.

Illustrative quote

Table 4. Informational/Appraisal Support Received and Given by PLHIV

Female, 54 years old, Maputo Province

Male, 38 years old, Sofala Province

Female, 33 years old, Zambe´zia Province

Male, 38 years old, Sofala Province

Male, 52 years old, Maputo Province

Female, 29 years old, Sofala Province

Female, 40 years old, Sofala Province

PLHIV demographics

SOCIAL SUPPORT IN MOZAMBIQUE

Participants also reported that they provide informational/ appraisal support to other PLHIV, family members, friends, and the broader community. This was done most commonly to educate others about HIV testing and the importance of knowing their HIV sero-status. A 65-year-old male explained how he encouraged his family to seek HIV counseling and testing services. I have told my children and even their spouses to get tested. I explained to them the importance of knowing their status so as to live a serene life. That’s what I always do for my children.

PLHIV also shared information about healthy living and stressed the importance of HIV prevention practices (e.g., condom use) to avoid infection. The provision of informational support by PLHIV occurs in the context of formalized peer education settings and informally through personal testimonies and conversations. I go to lectures and I have advised other people to reduce excesses [and to use] condoms during sexual intercourse as a way to prevent other diseases.—Female, 44 years old, Maputo Province

Combined forms of social support

Rather than relying on one individual or a singular type of support, PLHIV in this study demonstrate that they have access to a robust, intricate support system for addressing many of their needs. As illustrated below, emotional support (in this instance provided by the sister of a PLHIV) was most frequently combined with other types of social support, particularly instrumental support (here, the provision of transportation). My sister was the one who took me to the hospital here in Namaacha. I entered the doctor’s office with my sister and they told me that I had the HIV virus. My sister has given me much strength and courage.—Female, 45 years old, Maputo Province

An example of emotional and informational/appraisal support was shared by a 44-year-old female from Maputo Province who stated that her mother provided advice about ART adherence, and her son offered her encouragement. [My mother] gave me advice that the best thing to do would be to comply with treatment because, by not complying, I would get sick and she would not feel happy seeing her daughter suffer.One of my sons helped me a lot morally and encouraged me to receive treatment to live longer. So I came to the conclusion that my mother [and] my son.were giving me advice that would help me a lot. That’s what made me believe that I could live a little longer.

Informational support that reiterated medical instructions combined with instrumental support was also common as demonstrated by the brother of a PLHIV who emphasized following the guidance provided by health care workers and transported his weakened brother to the hospital. I told [my brother] that I got tested then I [and] that I have the HIV virus in my body.He said if that is what you have then you have to do the follow up and follow the hospital guidance.Even sometimes I couldn’t walk as well, [and] he carried me to hospital by bike for appointments.—Male, 30 years old, Zambe´zia Province

609 Social support needs

Although most participants described receiving various kinds of social support from many sources, there were consistently identified gaps and needs. Participants most frequently mentioned the desire for additional instrumental support, specifically food or nutritional subsidies. The existing ‘‘social action’’ programs are reportedly not sufficient, do not reach the entire population of PLHIV in need, and are available inconsistently. The following illustrative quotation from a PLHIV describes this need. I take the drugs but I do not have food, when we talk to the nurses they say that they do not have any, that it is donated so if a donation is made we would be given something.—Female, 55 years old, Sofala Province

Along with food, participants in all three provinces also mentioned the need for instrumental support in the form of transportation. One Maputo male, age 49, described walking 8 kilometers (approximately 5 miles) to the hospital and the need to leave the house at 4 o’clock in the morning to make his appointment. The distance for PLHIV to travel to health centers for ART was also noted below by a 29-year-old, Sofala female who indicated that it creates challenges for adherence. People living with HIV need support.I’m close to here, but there are people living in suburban areas. They live far away, in areas lacking infrastructure; they need transportation. Here at the Mafambisse Health Center there are many patients who come from.areas far away to do the follow-up, sometimes they cannot come some days to take their medicine.

Additional forms of instrumental support identified by some PLHIV were employment opportunities or direct financial support to purchase food and afford transportation. This sentiment was expressed by a 32-year-old female from Sofala who said the following: We are poor. We have to go work in the fields but we do not have that strength to work. The effort that the government could [take is to] find ways [for us] to work.For those people who are already suffering [with HIV], they can work. Maybe it could be somewhat normal, you know, to help.

A few participants requested additional informational and emotional support through formalized groups and associations and home-based care services supported by the MOH. If there were associations, then we could meet and discuss the HIV issue in the neighborhoods. In a place like this, they can come together to discuss what we can do.—Female, 28 years old, Zambe´zia Province There are those who were assigned to visit the houses, only that no one showed up at my house.So when you’re coughing, you have a friend that.bring you here, but for me it has not happened yet.—Female, 38-years-old, Sofala Province

Discussion

Social support is central in the lives of PLHIV in rural Mozambique and occurs reciprocally with PLHIV both receiving and providing a variety of support. The characterization of social support from the Mozambican PLHIV perspective, as evident in these data, is complex with diverse formal and informal social networks. These networks are comprised of multiple actors meeting a myriad of support

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needs and affected by a number of factors including disclosure status, economics, and health status. Our study demonstrates that social support received gave PLHIV the motivation to initiate and adhere to ART, seek HIV testing, disclose their HIV status, and resolve to live. It also facilitated access to medical services, food, housing, and information that reinforces PP messages. These findings are consistent with the importance and role of social support for PLHIV in other sub-Saharan Africa countries, including Ethiopia, Lesotho, South Africa, Tanzania, and Uganda.22–27 The majority of social support received by PLHIV in this study was instrumental, followed by emotional and informational/appraisal support. This differs from historical research conducted in the United States in which emotional support was the most common attribute and believed to be the most important.19,28 This finding was unexpected given that neither emotional nor informational support has associated monetary costs for networks of family and friends, and conceivably could be provided with greater ease. It is likely that in rural Mozambique, a developing context with extensive poverty, instrumental needs are considered more urgent and pressing than emotional needs. As a result, PLHIV may have a tendency to recall instances of instrumental support with greater saliency even if emotional support was provided more frequently because concrete assistance in the form of food or transportation resonates more for recipients. Support was typically received from family members and friends; when received from partners, support occurred within a concordant relationship and was bi-directional. PLHIV did not report receiving emotional support from health care workers but the information shared by providers was referenced. Beyond sexual partners, PLHIV provided a variety of support to other PLHIV and members of the general population. The desire of PLHIV to provide social support was found in other studies, which also noted PLHIV value experiences that foster meaning out of their own illness and welcome the gratitude and encouragement that supporting others can bring.22,25 Many PLHIV expressed a strong desire to share information about their personal experiences and provide advice in an effort to prevent HIV infections in their communities. As a result, PLHIV serve as formal and informal HIV prevention advocates and often encourage others to seek HIV testing and use condoms. PLHIV also provided informational/appraisal support to other PLHIV to assist with various aspects of positive living including ART adherence, proper diet, family planning and reduced alcohol consumption. In aggregate, this informational support within the communities where they reside helps to mainstream HIV and places PLHIV at the forefront of promoting healthy lifestyles and healthy choices, which is consistent with the Positive Health, Dignity and Prevention Policy Framework.29 The provision of informational support was primarily driven by an altruistic desire by PLHIV who feel they have received help. At times PLHIV provided instrumental support, most commonly to family members who were unaware of their HIV serostatus. Beyond Mozambique, the altruism that compels many PLHIV to be social support providers has been harnessed more systematically and at a larger scale through the use of PLHIV as community health advisors, peer counselors, and expert patients.22,25–27,30,31 The benefits of capitalizing on PLHIV in these roles appear

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mutually beneficial: PLHIV garner additional income and feel socially appreciated, and communities where they work have extended access to national health and social services.22,25 Such programs have proven to be feasible, acceptable, and a valuable strategy for the expansion of ART.27,30,31 PLHIV in our study clearly articulated existing social support needs in their lives, most notably instrumental support in the form of food and transportation. Although there are government-supported programs providing food and nutritional subsidies, PLHIV reported that these programs are not sufficient or widely available. The challenge with obtaining sufficient quantity and quality of food expressed by PLHIV in this study has been documented as a challenge to the sustainable scale up of ART and social equity in central Mozambique by Kalofonos.32 Data from other resourceconstrained settings highlight similar issues. The fear of taking ART without food and concern about sufficient nutritional sustenance dissuaded PLHIV in Kenya and Zambia from initiating and continuing treatment.33,34 Our study has several limitations. The PLHIV represented here were drawn from five health facilities in three of the eleven provinces in Mozambique and, as a result, the results may not generalizable. These facilities are sites where the PP program is implemented and may over-represent those likely to have integrated some social support components of PP. This is particularly the case for PLHIV provision of social support through clinic-based activities, which were encouraged by the program. Further, the PP intervention had not been implemented for the same length of time at the five sites. It is possible that the varying lengths of time from initial program implementation to data collection, ranging from 2 months to 2 years, may have affected the degree to which social support was integrated into services for PLHIV. However, we did not observe any noticeable variation in the data based on these timing differences. Additionally, these data are a sub-sample from the overall study evaluating the implementation of the PP training for health care workers and were chosen for this analysis because they specifically referenced aspects of social support. As such, these narratives do not represent all of the social support that is received or given by PLHIV and, in fact, may be an underestimation. Structured surveys are necessary to better understand the scope of existing social support available to PLHIV and their unmet needs. Finally, female PLHIV are over-represented in our sample, and it is possible that our results are biased towards the characteristics of this group. Women typically seek health care services more frequently and may also be more accustomed to receiving and providing support.35 It is therefore possible that our results do not adequately capture the social support received and given by male PLHIV. Despite these limitations, our study findings highlight important lessons for strengthening psycho-social support to improve the lives of rural Mozambicans living with HIV. Instrumental support, although widely received and provided by PLHIV, reportedly is not well coordinated (at best) and insufficient (at worst) to meet the needs of the growing number of PLHIV. Two specific instrumental needs identified by PLHIV included food and transportation, illustrating the limitations of the health system and its challenge responding to social factors that exacerbate the epidemic.

SOCIAL SUPPORT IN MOZAMBIQUE

Similar challenges face governments and ministries of health throughout the continent. The Mozambican MOH is exploring strategies to address the latter through a new community-based intervention to improve ART adherence and retention known in Mozambique as Grupo de Apoio a Adesa˜o Comunita´ria (Community Adherence Support Group) or GAAC. GAAC support is principally instrumental, assisting PLHIV with collecting ART and addressing transportation challenges, and demonstrates reciprocity as group members alternate responsibility for retrieving and distributing medication. Although GAAC is in the early stages of expansion, the initial impact and results are encouraging based on a pilot study conducted in Tete, a northern province.36 Mobile services for HIV care and treatment are being introduced in Mozambique and this will be another important source of instrumental support delivered in communities to respond to transportation and access difficulties. Finally, community health workers, known as agentes polivalentes elementares (APE), provide health education on a variety of topics such as treatment literacy and promote behavior change in remote locations throughout the country. APE, who comprise an official cadre within MOH, have been well received; however, their utility could be enhanced with a greater expansion of HIV care and treatment responsibilities as seen in other countries.23,26,27 Further, the active and open inclusion of PLHIV in this cadre, or as formally recognized peer health workers or educators, would be beneficial to the expansion of ART and needed provision of social support. Beyond these existing governmental efforts, our study also revealed areas in which the PP program could be strengthened. For example, as part of clinical contacts with PLHIV, PP-trained providers should be encouraged to share information about MOH strategies and services, facilitate the formation of support groups where they currently do not exist, and foster better linkages with existing services including those that offer nutritional support for PLHIV. Specific examples of nutritional support for PLHIV include integrated nutrition and HIV care and treatment services supported by the Government of Mozambique and PEPFAR through the World Food Program, and nutritional education and supplements provided by the Drug Resource Enhancement against AIDS and Malnutrition (DREAM) Project, implemented by the Community of Sant’ Egidio.37 The continued scale up of PP training and program implementation should also strive to enhance the empathic response of providers who were not mentioned as a source of emotional support by PLHIV. Finally, this study demonstrated the central role that family members have in social support for PLHIV. With this in mind, family-centered approaches are necessary and the PP program should explore the inclusion of training for family members so that they are better equipped to meet the emotional and informational needs of PLHIV. Family members who are not appropriately informed and prepared to serve as health advocates can become barriers to the wellbeing of PLHIV. This was noted in a qualitative study conducted in Zambia by Musheke and colleagues34 in which family members and friends encouraged herbal remedies and faith healing instead of ART that was believed to have negative impacts. Although this study provides useful information on the role of social support among PLHIV in rural Mozambique, there is a need for additional research to better under-

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stand the role of social support and its impact on the health of PLHIV, particularly males, in Mozambique. Specifically, enhanced understanding on the role of culture, provincial variations, gender, stigma, discrimination, and disclosure are critical for improving support for PLHIV. Acknowledgments

This research has been supported by the President’s Emergency Plan for AIDS Relief (PEPFAR) through the United States Department of Health and Human Services and the Centers for Disease Control and Prevention (CDC) under the terms of Cooperative Agreement Number H-F3-MOZ07-PTR-PWPs. The findings and conclusions presented in this article are those of the authors and do not necessarily represent the official position of the CDC. Author Disclosure Statement

No conflicting financial interests exist. References

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Address correspondence to: Beverley Cummings, MPH Division of Global HIV/AIDS Center for Global Health Centers for Disease Control and Prevention 2330 Maputo Place Dulles, VA 20189 E-mail: [email protected]