The Paradox of Family Support: Concerns of Tuberculosis-Infected HIV Patients About Involving Family and Friends in Their Treatment

Abstract

Despite the widely documented evidence that family support improves adherence to HIV treatment, some studies have reported no benefit or even a negative association between family support and adherence. This study reexamined the role of family support in treatment adherence to find out the circumstances under which family support for HIV and tuberculosis coinfected patients promotes or hinders treatment adherence in Cross River State, Nigeria. We conducted eight focus group discussions (FGDs) and four case histories with coinfected patients. In addition, 21 in-depth interviews (IDIs) were conducted with: 8 family members, 6 friends, and 7 care providers. Data were analyzed in a thematic format with the aid of NVIVO software. Overall, family support promotes adherence in coinfected patients. Family support may, however, have a negative effect on adherence when the recipient perceives that the support is given with ulterior motives (e.g., gossiping about them and becoming indebted to the support givers) and when the recipient is the primary breadwinner and feels that this role is being undermined. Family support is useful as a tool for scaling up adherence but the usefulness is context-specific and mediated by the patient's subjective interpretation of the support givers' motives.

Introduction

A dherence to treatment is critical in the cure of tuberculosis (TB) and management of HIV.^1

–4 Biological and clinical efficacy of treatment depends on strict adherence to 95% of recommended HIV treatment regimen,^5,6 although more recent reports stipulate 80% adherence to protease inhibitor (PI)-boosted and non-nucleoside reverse transcriptase inhibitors (NNRTI)-based regimens. However, PI-boosted and NNRTI-based regimens are not widely available in many parts of Africa. Studies have shown differing levels of adherence needed among antiretroviral (ARV) classes of medications⁷ as a result of differing methods of adherence measurement. Missing more than 10% to 20% of doses results in incomplete suppression of viral replication, decline in CD4 cell counts, and clinical progression to AIDS or death.⁵ Nonadherence to anti-TB treatment increases drug resistance and mortality in an otherwise curable disease.⁸ However, it has been demonstrated that adherence to HIV and TB treatments remains a serious challenge, especially in Africa.^9

–12 Several reports have shown that family support improves adherence to treatment.^4,13,14

Familial ties play significant roles in all kinds of behavior in Nigeria and elsewhere in Africa. The family network is very important and large, with a strong sense of right or wrong, and even moralistic. Coinfection with HIV and TB is a source of tension in the family and results in varying degrees of reactions. Family members' reactions impact the infected person's coping and treatment behavior.¹⁵ Infected persons face deep fears relating to loss of physical health, isolation, and rejection by family members.^15

–18 However, when available, family support counters the shame and guilt that coinfected members face.¹⁹ In addition, family support provides the impetus for coinfected individuals to overcome both social and personal barriers to access and adherence to treatment.²⁰ The role of family support in improving treatment uptake and adherence has therefore been encouraged.

Nevertheless, studies on the role of family support in improving treatment adherence have reported conflicting evidence. While some have found family support a positive mechanism others have disputed this, claiming that while family support may enhance adherence with infectious diseases that have no socially attached stigma, it might have a negative effect when the disease in question is associated with social stigma.²¹ In fact, because both the family and community can become stigmatized as a result of an infected individual member of a family,¹⁶ disclosure that should allow for family support becomes difficult. Studies by Martinez et al.²² and Naar-King et al.²³ reported no direct effect of social support on adherence. Some studies on the role of family support have either concluded no benefit or even a negative association between received family support and well-being.^8,24,25 When the research focus shifts to received support, that is, people's experience of being in need of support and receiving it, researchers have not found positive benefits to well-being. In fact, more often researchers have found that received or enacted support has had a negative association with well-being.^8,24 Reasons adduced for this include the perception that being the recipient of social support in times of stress could lower self-esteem because it highlights the support recipient's inability to manage the situation without help^8,26 and in case of stigma-attached conditions, shame that they may have brought the disease upon themselves.

Medication-taking is embedded within the social context.^27,28 As such, it is quite useful to understand the lived-experiences of HIV infected people as they draw on family support to negotiate everyday living.²⁹ The social circumstance under which family support is given, and the infected person's perception of it is important in examining adherence to treatment for HIV and TB coinfected patients. This study therefore reexamined family support in the context of adherence to treatment among HIV and TB comorbid patients. The objective was to understand whether circumstances exist under which infected persons may have concerns about involving family and friends in their life and how this can influence their adherence to treatment. Patients in Cross River State (CRS) were used for the study. With a prevalence of 6.1 to 8.0 CRS is among the states with the highest burden of HIV in Nigeria with a corresponding high TB prevalence.

Methods

This qualitative study was part of a larger study of the determinants of treatment adherence among HIV and TB coinfected patients receiving treatment in health facilities across Cross River State (CRS), Nigeria. All available HIV drug centers across the state were used to recruit patients for the study.

Six focus group discussions (FGDs), 4 case histories and 21 in-depth interviews (IDIs) were conducted. The FGDs were included for the social element of the group situation to produce more information than interviewing a single individual. There were 3 FGDs each for male and female participants and FGDs were made up of 8 discussants each. The FGDs were conducted during the treatment support group meetings of the coinfected persons. The case histories involved four patients, two each for male and female participants. They were used to make a retrospective construction of patients' HIV treatment experiences and adherence behavior from the time of treatment initiation to the time of the study. The aim was to uncover significant influences during the case management that may be responsible for explaining the observed patterns in patients' treatment behavior. Selection of participants for the case histories was purposive, based on the advice of the health providers on whether a patient was doing well or not with regards to adherence. Simple random sampling of available patients was used to select participants for the FGDs based on three categories: young, old, and a mixture of old and young patients for both male and female. We use “treatment” in this study to refer to both antiretroviral and anti-TB medication. Thus, adherence to treatment refers to both HIV and TB treatment because patients used for the study were coinfected.

Interview themes centerd on what family and friends do to help patients attain the desired adherence to their treatment. For example, patients were asked to discuss family support under “perceived or desired” support and “actual support” that they have received or would have wanted to receive in the course of their medication. We tailored the interviews along emotional, financial, moral, and nutritional support. Interviews were recorded using digital audio-recorders. Nonverbal cues observed during interviews were also written down. Each audio recording was appropriately labeled with reference to the category of respondents (e.g., male or female), date of interview, type of interview (FGD, IDI, or case history), and location (using the name of the area where facility is located).

The recorded interviews were sorted by type and arranged by category of participant. Interviews were transcribed and translated, where the local language was used. The transcripts were read and errors in transcription corrected before analysis. Data were analyzed in a thematic format with the aid of NVIVO software. Content analysis performed followed Colaizzi's modalities. Data analysis thus involves becoming enmeshed by multiple reading and extracting significant statements and phrases related to family support and medication adherence, drawing meanings from those phrases and statements by forming the meanings into themes and using the themes to build a narrative of patients' experiences with family support and how this influenced their treatment adherence.

Ethical approval was obtained at three levels: the University of Ibadan/University College Hospital (UI/UCH) Ethical committee where the authors are affiliated, the ethical committee of the University of Calabar Teaching Hospital (UCTH), which was one of the selected study sites and the CRS ministry of health. Patients also signed written informed consent.

Results

A total of 52 coinfected persons were involved in the study with 52 in FGDs and 4 in case histories. We deliberately sought to balance the gender and age composition of the participants. Findings are organized according to the themes that emerged from the interviews: financial support, advice and moral support, spiritual/prayer, nutritional/feeding support and reminders to take drugs; rejection of status by nonpositive partners. Each of these themes could be a source of motivation for treatment adherence or engender negative treatment behavior.

Financial support

One of the biggest problems facing people on treatment for HIV or TB is scarcity of resources. The health status of an infected person compromised their jobs and financial position, one way or the other. Thus, the support of family and friends in this regard is useful and well appreciated, with the potential to raise the confidence and well-being of the infected person. Financial support was a generally recognized and discussed issue among participants in this study. For example, a 38-year-old, married male participant in a case history, recognized the help received from friends thus:

Many of my friends who care to know about my health situation, I tell them. I have told many of them that I am positive. Many of them assisted financially and supported me in different ways to get married. They…from time to time, send money for me and my wife. They visit me. I thank God that I did not feel ashamed to tell them about my status.

An important point here is that financial support does not necessarily have to be geared towards treatment but to the particular needs of the infected person at the time. By removing the burden, patients improve their concentration in other things, including medication. On the other hand, financial support may not be well-perceived if the infected person feels that they are a burden to their friends and family. Discussants in an FGD were of the view that:

It is difficult if the person infected is one that other family members look up to, or one that has been educated by the family and is the breadwinner. These kinds of people always agonize about letting their family down and…instead of contributing to helping the family resources, as they should, they rather deplete them (FGD, Older Male).

Such guilt feeling in receiving financial help from friends or family members can have unanticipated consequences of becoming a barrier instead of facilitator. However, participants mainly discussed financial support as a facilitator of adherence.

In some cases, patients can be given all material and physical support that the family can provide but are still not adherent to treatment. This happens when patients do not feel emotional connection with the people giving support. When an infected person feels that the support is mechanical without any real feeling of love and affection involved, instead of being motivated, they get depressed and feel let down. The fear of losing the true love and care of family could thus promote nondisclosure and nondeployment of family support. A 54-year-old widow mentioned that she could not:

Tell…children or anybody about being infected and being on drugs. My children will feel very disappointed with me. No one will be real with you again; people will pretend to love you so that they can sit with their friends later and gossip about you. It is better to die instead of telling people about your situation because no one really cares for you once they know. It is better to take care of yourself (Widow, 54, IDI).

This has the fear of shame and despair of having let people down at its core. Besides, patients may perceive that with opening up to people, the relationship will no longer be satisfactory but that of benefactor and beneficiary, which at best is unequal.

Advice and emotional support

Both self- and social-stigmatization are issues that originate with feelings or perception of what others will do or think about one. Patients usually tend to become too critical of close family members' or friends' every action and analyze them for “hidden messages” aimed at them. Of course, human beings are likely to make people who are different from themselves to feel unwanted and ashamed. The excerpts from the interviews capture this appropriately thus:

I still have friends and relatives who still relate with me well. But the truth is that many people who hear that you have this type of sickness will not want to come close to you again. Even when they do, they will not be real again. It is the time you have a problem that you know people that love you. Some of my friends have left me but some are still good to me. I am very happy my sisters are really standing by me (Female patient, 34, Case History).

I told my sister and my elder brother about my condition. At the first time they were not happy but later they took things normal with me. Now [they] are really helping me. They call me early in the morning for prayers and encourage me to put all my worries to God in prayers because only God can decide our fate. I feel that I am now closer to them than before I fell sick.

I was not really happy with myself. I tell you the truth, nobody will know that he has this problem and be happy.

I want to marry, but you know it's not easy with my condition. But I still believe that God will help me to marry. I take my drugs always to keep healthy and strong. I am sure I will marry one day.

A daughter of a female patient who accompanied her mother to the clinic for her appointment and drugs maintained that:

I really feel pity for them. Like my mother I always feel pity for her because of continuous taking of drugs. I don't really blame any of them for their health conditions. HIV does not come through sex alone. Even if sex is the most common means of transmission, many prostitutes have not been infected. Some got it through barbing shops while some got it through blood transfusion. I don't see the rationale in blaming any person who is infected. Many people believe that any person with HIV got it through sexual intercourse, which is not true. Can you tell me that my aged mother sitting down there got HIV from sexual intercourse? TB is also stigmatized but it is not the same thing as HIV (Daughter of an infected woman, 28, IDI).

A number of issues can be seen from the above excerpts. First, stigmatization is still a major problem facing HIV infected persons especially as campaigns to prevent the spread of the virus has focus more on risky sexual relationships while other sources of transmission receive little attention. This bound to cause misconception especially among people where there is a high level of illiteracy. As a result, infected persons face blaming and shaming as they are perceived as being sexually loose. Second, TB, being curable and with a different mode of transmission, does not engender much stigmatization as HIV.

Spiritual support and prayer

There are contrasting messages coming from giving spiritual support and prayer. Whereas one can feel reassured in the grace of God and His power to heal, the feeling that one disobeyed Him by sinning with one's body is present every time the word of God is preached. Beyond this, patients have a strong fear of gossip when people, even fellow members of the Church, know about their condition. Help and love shown is seen as a means for people to be able to later gossip. Many times patients force themselves to go to church because of the guilt and shame they feel when the priests start exhorting about the virtue of chastity and abstinence including the punishment for sins. But participants in the study were generally of the view that:

Of all the things that can help one carry on with life, prayer is the most important. It is prayer that helps you know that even if you became infected through your own fault, God can help you to live long and can forgive your sins (Male FGD)

Phrases patients used most frequently include “God is the author and finisher of my faith,” “[M]y father who made me will not allow me to die young,” “Healing comes from God,” “I pray all the time,” “I go to church regularly.”

Nutritional/feeding support

Families and friends can also help patients with feeding. Patients always complain of not being able to take the drugs because they had no food to eat. Usually, the nurses advise patients to eat much food while on drugs. Getting support from loved ones in terms of providing what to eat is really important; and patients involved in this study had no problems in this regard. A friend of an infected person insisted that:

I can give them food to eat. I sell food, at times after cooking I take to my friend to eat before taking her drugs. I don't want her to stay without drugs because she had no food. In those days I use to feel that people had HIV because of the life they live. Now I know better and often try my best to help (IDI, female friend, food-seller).

Some patients reported not having problems adhering to drugs due to food availability:

I take my drugs even when I have not had food. The nurse said I should drink plenty of water and take my medicine if there is no food and afterwards look for food to eat. At times, if my medicine finishes, and I have no money to go to the hospital, I go and borrow or walk. I take my medicine very serious and I carry it everywhere I go (Case history, Male patient, 43).]

I live in my parents' house. I don't need to worry about getting help from people. They provide me with all I need like food.

The nurses also advise the patients to take a lot of water if they do not have what to eat at any particular time, and after taking the drugs with enough water they can then look for food to eat.

Reminders to take drugs

A number of studies have reported that a significant proportion of patients missed medication because they simply forgot. Forgetfulness can be a function of anxiety of one's life situation and can negatively affect adherence to treatment. Thus, support to infected persons in the form of reminders to take medication plays a vital role in scaling-up of treatment adherence. The usefulness of friends and family member in this regard is dependent on revelation of status by the infected person. Some of the key points from the data reveal much usefulness of family and friends as these views aptly captured:

My family know of my situation and many of them are helping me. My friends from time to time call me to take my treatment seriously and these calls are very helpful (Case history, Male, 38).

Two of my friends call me or send text messages regularly to ask me if I have taken my drugs. Sometimes I feel bad when they call because I have a fear of who may be present with them at the time of the call. But I still find their calls and reminders useful. Actually, some days when I don't get any message I feel lonely as if I have been forgotten by all who used to be close to me. It's not that I really need somebody to remind to take my pills, the only thing is that since I don't go out much or associate a lot now, getting these calls really make me feel great relief. But it is not good when people can sit anywhere, even with their friends and call to remind you to take drugs, so that many more people get to know your problem and gossip (Case history, Female Patient, 30).

Just as the infected persons need the love of others and their support to live a quality life, so do many of those around them see helping friends as an opportunity to do good work. A friend of a patient expressed this succinctly thus:

Sometimes I escort my friend to the hospital, like today. If I did not come you would not have seen me. Before I knew that my friend was infected and started coming with her when I have time, I was not used to visiting sick people in the hospital. Now I know that my help and support is really very useful. It also makes me feel that I am contributing something to humanity by giving help to my friend and encouraging anyone I know who is infected (IDI, female friend of an infected female patient).

A patient insisted that she cannot let her family know she is taking drugs for HIV:

Let me tell you the truth, the only times I miss my drugs is when I travel home and I am with my parents and siblings. There is no way I am going to let them see me taking drugs and start to answer questions about what is wrong with me. I don't carry my drugs when I go home. I don't mind you knowing my status, but my people will die if they know. Not that they will not support me, they will, I know. But they will worry and worry…and will also treat me with pity, which I don't want. One time I tried to take my drugs at home in secret and was nearly caught.

Sometimes when I travel to my home (that was I think two times) I do not carry my drugs along. After those times, I have not missed my drugs again.

These views relate to issues around disclosure of status. In this kind of situation, patients fail to disclose their status and as such do not deploy family support as a resource.

Rejection of status by nonpositive partners

When people with HIV first become aware of their status, their first source of worry is whether their spouses or sexual partners are going to discontinue their relationship. By virtue of their status, and ill-health they stop a lot of activities that will normally give them pleasure and are almost solely dependent on their partners for what happiness they can get. Lack of support from family then could be an inhibitor of adherence. This story below is a clear pointer to this fact:

I have really stopped many things. I reduce how I go out. I regulate what I eat, I don't drink alcohol; I eat more of fruits and vegetables. My boyfriend and parents are all caring. My friends who know of my status are helping me. I have not being stigmatized. I pray more and go to church frequently. Since I started taking drugs, I have been serious [with my medicines]. I don't miss my clinic days and my health has improved. As you can see, if I don't tell you that I am positive you will never know.

However, she complained:

The only problem I have for now is my boyfriend who is asking me to stop taking the drugs because he feels that I am not positive. There was a time he seized my drugs for several days and I did not take my drugs during those days. He has been insisting that I go and see his pastor for prayers instead of taking drugs…What worries me is that my boyfriend is not positive. He has gone for test several times and the results have been negative. To be sincere, he has gone for test more than four times. He does not believe that I am positive. He still sleeps with me without condom. All my appeals to him to use condom on me has not yielded any result (Case History, Female patient, 26, trader).

Another patient recounted a rather frustrating and potentially dangerous situation:

What really gave me headache was that I was going to marry. It was about the same time that I discovered I was infected. I knew I have to have a rethink about my life. Above all, the counseling I received really helped me not to worry myself too much. But when I told my girlfriend she got very upset and decided to leave me. That was when I felt really worried. I felt like just falling down and die. I saw myself as not worth to live any longer. I was nervous, worried, and restless. I thought about a lot of things, whether to kill myself and then I made up my mind to spread the disease. My belief was that somebody gave me the disease and spoilt my life, so I have to give it to another person. But through counseling I changed my mind not to do so, but it was not easy. Whenever I think of that moment, I get depressed for days on end. During such times I may miss my drugs, it doesn't happen frequently.

Some of my friends stopped being close but my very good friends still treat me well. Just that the level at which we were is not like that again.

Discussion

There are many complex factors that promote and hinder adherence to treatment and as such the effectiveness of any intervention is unpredictable. Thus, this necessitates context-specific research to unearth issues that must be dealt with for the improvement in the level of adherence for HIV and TB medication. This research critically re-examined the influence of family support network in the up-scaling of treatment adherence among HIV and TB coinfected patients receiving treatment from hospitals across Cross River State, Nigeria.

Our study had a number of limitations. The number of participants for this study was small and qualitative methods were used. As a result, we could not test significance of the relationships between having family support and adherence to treatment. Also, we cannot generalize the findings based on the size of the sample. Nevertheless, these findings could help inform the design of intervention policies especially those involving the family in the process of improving adherence.

Family support is expressly seen by participants as central to medication adherence; one of the main drawbacks to its maximal utilization is that the infected persons tend to deprive themselves of it by becoming withdrawn and cynical about expressed or support-related behavior. Fear of condemnation and stigma from family members and friends, and from the family as a whole, makes people with HIV and/ or TB to hide their status. Hence, when they disclose their status, they often have mixed feelings about the support promised and received.

Similar to findings by other researchers,^30
–32 our study found that unwillingness to take medicine in the presence of loved ones (family and friends) is a strong reason why patients default in their treatment regimen. However, those who have shared their diagnosis with their family and have received support thereof found family support very useful in attaining the required level of adherence. In some cases, both giving and receiving family support may be difficult because both the family and community can become stigmatized as a result of an infected individual member of a family. When families are stigmatized, uninfected members experience unhappiness, thus making it difficult for family support to be provided. At the same time, those infected feel distressed because of the guilt that they are the cause of unhappiness in the family. This may have negation consequences on treatment behavior.

Family support for people who should be the primary breadwinner of the family can produce negative results. In such cases, the breadwinners tend to feel irresponsible because they cannot carry out the expected requirement of providing for their families and also because they have become dependent on family goodwill. Family support can help counter the effect of the personal guilt and shame they feel.

One of the problems that could hinder the effective deployment of family support in improving adherence is the feeling that the infected person is going to die irrespective of the support the family gives. Both infected persons and their family have a fatalistic belief at the back of their minds that once somebody has HIV with a TB coinfection, they will die even if not immediately.

Moreover, it appears that what patients really need from family is emotional connectedness more than material or instrumental support although both are necessary. In a study on perceived social support and medication adherence among African American women, Edwards³¹ had found similarly that emotional and instrumental support were important but the former more so in terms of expressed love, care, and commitment is necessary in scaling up adherence. Ciambrone³³ found that where families give instrumental support without emotional support, its effectiveness as a means of encouraging sustained treatment adherence is diminished.

There are some situations in which the HIV patients may not like to involve others. A feeling that support is given so that those who give support can have a “field day” gossiping about them can bring down the whole support relationship. Tensions can build up in the family relationships because, one the one hand, family members will sacrifice normal discussions out of fear of hurting the infected person, and on the other hand, the infected person may become too sensitive and interpret “hidden messages” that are not there.

Our study confirmed the importance of family support in enhancing adherence ARV. However, it also emphasized the role that the infected persons' perception of such support could play in determining whether support is appreciated and the extent to which this can then influence adherence. Those who provide care for people on ARV/anti-TB medication should thus continue to make efforts to garner family support for patients. They should however be sensitized about situations in which support could be misinterpreted and then become counterproductive. Involving family and friends in HIV and TB treatment will require disclosure and openness. Openness can create opportunities for better ways of providing support,³⁴ although patients are often concerned about revealing their status because of stigma and the pain they may cause their family members if they reveal.³⁵ In some parts of the world, it has been found that involving family and friends is a pertinent issue, especially Africa and Asia where family relationships are held in high regard.³⁶ It is also instructive to note that disclosure and involvement of family members in HIV treatment has been found to be key to improved adherence elsewhere.³⁷ We conclude that family support can be a useful tool in the up-scaling of adherence if the patients can be open with family members and friends but it must be handled with finesse since it is a potential source of tension and thus, nonadherence.

Footnotes

Acknowledgments

The work on which this paper is based was supported by African Doctoral Dissertation Research Fellowship offered by the African Population and Health Research Center (APHRC) in partnership with the International Development Research Centre (IDRC) and Ford Foundation; The Dan David Prize and CODESRIA. The important contributions of our respondents and fieldworkers are also acknowledged.

Author Disclosure Statement

No competing financial interests exist.

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