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Emotional Needs and Support

Introduction

A female patient receiving counsellingAs with any serious health concern, diagnosis with HIV may cause people to require many forms of support needs. This page looks at emotional needs and the support that people may need. Some of the feelings that people living with HIV experience may include shock or anger at being diagnosed, fear over how everything will progress, fear of isolation by family and friends, and worries about infecting others. By bearing such a heavy emotional burden it is not surprising that depression is twice as common in people living with HIV compared to the general population. 1 Relatives and friends will also be deeply affected by what the HIV-positive person is going through.

Living with HIV: Being diagnosed

“I was diagnosed with HIV June 16, 2005. I was 19 yrs old and that was the worst day of my life.”

Everyone’s experience will be different but being diagnosed with HIV can create a raft of emotions including anger, denial, depression, anxiety, shock, and fear of death. 2 Further emotional stress could stem from thoughts about who people should tell, how lifestyle will change and if it will be possible to have children. Some may also experience guilt, viewing their infection as a punishment for being gay or taking drugs, or for the worry they may cause to other people and for possibly infecting others. 3 Just as reactions differ, so too will the ways in which people deal with them. There is no “one-size-fits-all” method of dealing with something as profound as a positive HIV diagnosis and people should find what works best for them.

Counselling can be helpful in order to come to terms with the diagnosis and resulting feelings, and as a precursor to dealing with the virus itself. Discussing the patient’s immediate emotional concerns is recommended by the World Health Organization (WHO) as part of post-test counselling. 4 Such steps could enable the patient to more effectively absorb information regarding the consequences of their diagnosis, and they might make better-considered decisions about their next steps including preventing risky behaviour and beginning treatment. It is often considered ineffective to discuss possible clinical procedures with the patient soon after their diagnosis, and that this should generally be postponed until a later time. One doctor has suggested that after someone is told they are positive, ‘[t]he physician should expect that the patient will not “hear” a detailed description of management options, which should be discussed or reviewed at subsequent visits.’ 5

When patients are ready to receive advice, those who are well informed about the virus and the associated medical implications have been found to manage their illness better. In a palliative care survey in South Africa and Uganda one HIV-positive patient responded, “Yes, I was told everything at the clinic about HIV and AIDS, and I think I have used that to my advantage.” Conversely, the authors of the investigation found patients and caregivers’ ability to cope was diminished by poor knowledge and provision of information, and this affected ability to care and plan for the future. 6

“After the initial shock I went into complete denial – you see I chose to ignore the fact of my status – even though at the back of my mind I knew.”South African Mother

Visit our page on Learning you are HIV positive to find out the different ways people deal with positive HIV diagnoses.

Living with HIV: Disclosure

HIV-positive couple with their sons in KenyaDisclosing one’s status to partners, families, friends, colleagues and health workers can be an incredibly tough and emotional experience, and something which people without HIV would probably not fully comprehend. Issues may differ depending on who is being told but it is likely that people will be deeply anxious about how the other person will react and they will not want to cause them unnecessary worry. Disclosure is vitally important though and can lead to safer sexual practices as well as encouraging partners to get tested. It can also be the first call for support from friends and family and a way of discovering support groups and networks of people living with HIV. In a survey of 187 people living with HIV in Nigeria, expectation of economic, spiritual, social and emotional support was the major reason for disclosure, indicating the value of such sources of support in encouraging disclosure. 7

However, due to the high levels of stigmatisation of people living with HIV, and wide misunderstanding of the disease, disclosure of an HIV-positive status is made very difficult for some people, perhaps harder than informing people about infections with other viruses or diseases. Interviews examining problems faced by HIV-positive schoolchildren in Namibia and Tanzania revealed it was often parents and carers who forbade children from disclosing their status as a way to protect them. This was seen as a consequence of an environment that offers no incentive to disclose.

“I am in pre-Form One. No one at school knows. It would be better if they do know but I am afraid of stigma.” Girl, Dar es Salaam

Just as children living with HIV face immense difficulty disclosing their status, so too do parents in revealing their own status to their children. Some interviewed parents believed disclosure would be the first step in inviting discrimination.

“A month went by before I finally decided to tell my parents. My mother of course was devastated, but she has learned to cope with my calamity. She is my number one support. I love her so much, and this has strengthened our relationship.”

Resilient, Los Angeles

Although stigmatisation and discrimination are clearly major problems in preventing disclosure, many people living with HIV encounter positive reactions. In some cases, fears of a negative response to disclosure may not be borne out by reality. In a study of Southwest Ethiopia, of the 127 HIV-positive people who anticipated a negative reaction from their partners, 87 percent received support and understanding. Conversely, very few (less than 4%) of those who believed they would get a positive reaction experienced negative reactions. Out of the total sample, only 5 percent experienced a negative reaction from their partners and no one received physical abuse. 8

Unfortunately, there is no straightforward or easy way to disclose an HIV-positive status and methods of disclosure will vary by context and relationship. Divulging such personal information should occur only when it feels comfortable to do so. However, issues such as responsibility to others should also be considered. Some people may prefer to inform others through, or with the help of, a third party such as a doctor. Seeking advice from other HIV-positive people who have disclosed their status could also be useful as long as it is remembered that everyone’s experience and resulting reactions will differ.

Living with HIV: Beginning treatment

People may live with HIV for many years after diagnosis with little or no noticeable change in their health. However, sooner or later it will be necessary to start antiretroviral (ARV) treatment in order to slow the progression of the disease. This can be a very challenging time as the realisation that ARV drugs will have to be taken daily for life is a stark reminder of being infected with a chronic disease. Any antiretroviral drug side effects from the treatment will also serve to bring home the reality of HIV.

For antiretroviral therapy to be most effective, patients must adhere well to the regimen, meaning they must take their medicine at the prescribed time at least 95% of the time. Such a high degree of commitment means that someone should be in a fit mental state before beginning HIV treatment. It has been shown that of people living with HIV who had depression, those who took antidepressants adhered better to antiretroviral therapy. Furthermore, adherence rates among those taking depression medication were similar to those without depression. 9 Results such as this underline both the need for depression to be both diagnosed and then treated as a means of positively affecting HIV treatment.

My CD4 was in double digits and I found out that I was resistant to all of the medication I had been taking. I couldn't believe what I was hearing and ANGRY is putting it mildly as to how I was feeling at that moment, as well as betrayed. I wanted to sue everyone involved and make them pay for their inability to treat me properly.”Mark

Needing to switch treatment if it is established that the original drug regimen is failing to work or is not tolerable can also be distressing. It may be upsetting to know that some treatments do not work effectively and that switching drugs, for perhaps not the first time, is one more step in exhausting all available options. People may also recall bad experiences from previous drug regimens and be anxious about what the new drugs may bring. Adjusting to a new treatment regimen may be mentally draining if dosage, frequency and time of administration differs from the one the person became accustomed to.

For people not able to access HIV treatment, they have to live with HIV knowing they cannot take the most effective action against the disease’s progression.

Mothers living with HIV

An HIV-positive mother with her uninfected daughter, Thailand Pregnant women with HIV or mothers of young children can face an additional emotional burden because of the fear they will transmit or have transmitted HIV to their child. They may also have concerns about having children in the future.

Although mothers should be free to decide how they feed their baby based on available knowledge and resources, social acceptability is an added pressure that influences feeding methods. Because of the stigmatisation of HIV and the cultural norm to breastfeed in many areas of the world, formula feeding is often frowned upon.

“I went through depression and thought I was going to die, but I did not. I lived because I was carrying him, I talked to him while he was in my stomach, I apologized for bringing him to the world with such a risk at hand.”Nosi, South Africa

Among HIV-positive mothers in South Africa it was found that feeding methods differed depending on factors including active coping skills and whether they had disclosed their status to a partner. Higher levels of both were more likely to lead to formula feeding, reflecting how social pressure exerts undue influence on mothers’ decisions. Of those women who breastfed, more than 60% believed (incorrectly) that “all mothers who breastfeed their babies will transmit HIV”, indicating many thought they were taking an extreme risk by breastfeeding. 10 This research also demonstrates the lack of knowledge about the risks and merits of breastfeeding to babies’ health in the context of HIV. Improved, culturally aware and circumstantially-relevant counselling on breastfeeding options would not only improve the life chances of millions of babies, but could alleviate the worry faced by mothers who feed their baby one way or the other. Mothers like those who agreed with the statement above may suffer severe emotional distress believing they are harming their baby, despite the fact that the WHO recommends exclusive breastfeeding for six months unless replacement feeding is acceptable, feasible, affordable, sustainable and safe. 11

Telling children they are HIV positive

Gradually informing children they are HIV positive can be seen as an important stage of the treatment process. If children understand their condition they may be more willing to continue treatment. Talking frankly and honestly with someone they trust is likely to counter any misleading information they may have heard, and this is likely to foster a better relationship between parent/carer and child. Non-disclosure could lead to anxiety, unnecessary fears, awkward moments and an air of secrecy in the home which could affect the emotional and social development of the child. As children reach adolescence and become sexually active it is vital they know their status and how HIV is transmitted to prevent infecting others. 12 The extent to which HIV is talked about openly between parents and children may go someway in creating an environment conducive to reducing stigma.

Informing children of their HIV-positive status can be a very challenging thing for parents or carers to do. They may feel a sense of guilt for having infected their child; they may think the child is not yet mature enough to cope or are afraid of how the child will react; they may not be able to answer the questions that follow; they may be afraid of how their peers and community could react; or they may not know the best way to disclose such information. 13

“At home my mother and myself have tested and been found positive. She has told me not even to tell my relatives; not even my own sister because she is afraid I will be stigmatised.”Young girl, Tanzania

According to UNICEF it is normal for HIV-positive children to begin being informed of their status between five and seven-years-old. 14 There are many things that will need to be explained to the child, all of which he or she may not be able to absorb at once in all their complexity. What children are told, and when, will depend on their age and their own level of development and understanding. Initial methods of explaining may include telling the child that they see the doctor because they are sick, that medicine makes them strong, and making analogies with doctor visits that appear in stories. As children get older and more interested in the body, terms such as ‘cells’, ‘virus’ and ‘blood test’ may be used to further explain their treatment. Later, children may be informed about the lifelong nature of their treatment, and be told about HIV and AIDS, and how these can develop and be treated to keep people healthier. The ways in which the virus is, and is not, transmitted, and how people living with HIV can live normal lives will also be discussed. It will be important to address when and with whom children discuss their status, and, as the child becomes more informed and inquisitive, to consider when is an appropriate time to talk about other family members’ status. 15

It would be expected that children would find it upsetting to be informed of their status. However, it has been found that children often cope better than adults when they are told, and it has also been shown that younger children manage better than older children when they are told of other fundamental traits such as being a foster child. 16

The advent of antiretroviral medicine means many children are growing older with HIV and having to deal with emotional issues, whereas before ARVs few were expected to outlive their infancy. If mother-to-child transmission is the cause of the child’s infection it is possible they will see their parent or parents die from AIDS-related diseases while at a young age. This is not only traumatic in itself but will take away perhaps the child’s strongest pillar of emotional support and exacerbate feelings of despair and loneliness.

Like other people living with HIV it is likely children will face discrimination, possibly from family or their peers and teachers at school. Other schooling issues include prolonged absence, being unable to afford school resources, and the inability of the school to help.

It has been argued that integrating mental health services with primary health systems to support underserved children and adolescents facing these problems would not be very costly. 17 As treatment coverage increases and greater numbers survive their infant years to become adolescents and young adults, further exploration into how best to support HIV-positive children with these issues is needed.

Family members, partners and friends of HIV-positive people

“Still, the shock of discovering my status is something I will never wish on my worst enemy. I thought my life is over… In fact, I started thinking of ways I could end my life. My husband has been by my side all along, and he is just as devastated.”TK, South Africa

A schoolteacher fired after testing hiv positive is embraced daughter - IndiaMillions of people around the world know people close to themselves who are living with HIV. They are likely to be fearful and upset over how the disease could affect their loved-ones or their relationship, worry about how they can best support that person and even feel guilt for feeling the way they do. Sometimes family and friends will find it more difficult than the patients themselves to come to terms with the diagnosis. 18 Again, there are no ideal ways to cope. Discussing feelings with others including friends, family and support groups, learning about HIV, being healthy, and making space and time to relax and take part in other activities can help.

“He found it incredibly difficult to handle and told me he was terrified. I saw another side to this person and for 2 days all he talked about was how is he going to cope? At first I found this startling as I was the one with the diagnosis, but in fact turned all my efforts in to helping him cope with his mental health. It took my mind away from what I was supposed to be dealing with. However 3 days later he told me he could cope no longer and I was sent on my merry way.” Trevor, Brisbane, Australia

“What we as parents go through is a myriad of anger, confusion and grief”

People are also left to mourn when their relative, partner or friend passes away due to AIDS. In a sample of just under 200 people living with HIV in Canada 80% had experienced the loss of someone close to them from AIDS. Of these, one-third had lost a partner or spouse, 15% a family member and 91% a friend. Symptoms of grief were found to be very present and not simply past occurrences. 19

“June 6th the most devastating news a mother could hear was 'I am HIV Positive'. It is now a week later and the socked in the gut feeling has subsided but the tears have now let lose. I broke down today in the Borders bookstore after finding out that none of the bookstores carry any books on HIV and living with this disease.

“I am so scared for him. My God I want to wrap him in cotton and take him home with me. I just have to wait. Wait for virus level results, T-Cell results, results for everything and the waiting is killing me…..

“What we as parents go through is a myriad of anger, confusion and grief. I found that there were only two support groups for parents in the Chicagoland area and I was frustrated and saddened by this.

“It is a helpless feeling; one that I know many parents can be overwhelmed by. So I do feel there is a need for a support group for parents of HIV+ children and so it starts. I am learning to breathe……”Jude

Levels of grief following the death of someone from AIDS may be influenced by how people deal with their loss. In the Canadian study, those who used avoidant coping strategies – ways of dealing with stressful events that do not directly address the event, such as substance abuse, denial and withdrawal – were found to have greater levels of grief. It was suggested that interventions promoting adaptive coping strategies such as finding support, developing communication and finding meaning could be useful in assisting people affected by, and living with, HIV to manage their loss. 20.  Research also found an AIDS-bereavement coping group was successful in reducing levels of grief, depression and hopelessness, as well as encouraging adaptive coping. 21

Although emotional pain and grief or bereavement are inevitable among people whose loved ones are living with HIV or have passed away, ways can be found to moderate their impact. This is not to say that the goal of finding ways to deal with emotions should be to eliminate such feelings – everyone should feel free to grieve or mourn however, and for as long as, they wish – just that such feelings can be managed so they do not continue to overwhelm. It follows that people in mourning should not feel guilty if they find something that helps them relieve their suffering and come to terms with the death. Diminished feelings of bereavement or ‘moving on’ should not be seen as reflecting lessened feelings of love for the deceased relative or friend.

Impact of HIV and AIDS on carers

Caring for a person living with HIV without adequate support places huge demands on that carer, affecting their mental and social health and often resulting in mental and physical collapse. Primary carers are very often close family members so suffer the emotional burdens associated with their dual roles.

In South Africa, people tasked with providing home based care experienced a range of negative impacts associated with both the caring process and the lack of a supportive home-based care organisation. Emotional stress resulted from carers’ roles being made harder by poverty, poor infrastructure, a lack of affordable transport, and difficulties in accessing care. Carers also felt their own feelings should be suspended, and stress kept inside, in order to best care for the ill person. Some felt there was little hope in the situation in which they found themselves. The inability to take a mental and physical break from caring by going to work or socialising added to feelings of hopelessness and loneliness at the point when these activities would have been most beneficial. It was considered that acknowledgement by others, including health authorities, of their care work would have a positive impact on their mental health. 22

One caregiver who was still at school responded: “It made me realize that I don’t have a future. I just remained as a person who had no desire for anything.”

It should also not be forgotten that professionals working with people living with HIV may also suffer in similar ways to carers, particularly if they have worked with the patient for a long time.

“The Dr. suggested an HIV test as well since it had already been a year since my last one. Upon telling me, he told me that the results broke his heart.” Joseph, Atlanta, USA

HIV and depression: cause and effect

The World Health Organisation’s (WHO) mental health action plan has highlighted the need for greater integration of mental health services into HIV services and programs. 23 Addressing the emotional needs of people living with HIV has positive outcomes on individuals and communities, serving to improve overall health, strengthen preventive behaviour, and improve quality of life. 24 It should therefore be a vital part of HIV treatment and care. 

A recent survey identified HIV-positive men who have sex with men (MSM) as being disproportionately affected by mental illness. 25  This is particularly true in countries where same-sex conduct is criminalised and degraded. Despite this, there is evidence that MSM who are living with HIV are not receiving the mental health care integral to their accessing and continuing HIV treatment successfully. Research from South Africa has suggested that these gaps in care can be exacerbated by mental health provider’s stigma against HIV, and also by HIV service providers’ stigma against mental health illness. 26 

A study of Tanzanian women living with HIV found depression was associated with disease progression and a shorter life span. 27A similar relationship was found in the US, where a third of HIV-positive women were assessed as chronically depressed. Further, the AIDS-related mortality rate of those women with chronic depression was around double that of women who had only little or no signs of depression. Finding ways to reduce symptoms of depression could potentially prolong and improve the lives of women with HIV. 28

Among people living with HIV in rural areas of Vermont, USA, heightened levels of depression were associated with facing barriers to accessing HIV care (including distance to travel, stigma, availability of quality medical and psychological services, and personal resources). In turn, depressive symptoms were linked with people engaging in riskier sexual behaviour, and not expecting support if they disclosed their status. This highlights how targeting symptoms of depression in people living with HIV can be a way to reduce the sexual transmission of HIV. 29

Sources of help and support for HIV and AIDS

Strong feelings are a natural response to profound life-altering occasions such as being diagnosed with HIV or learning someone you love is HIV-positive. These should not be considered irrational reactions. It should be remembered that people have a right to feel the way they do, that emotions are neither ‘right’ nor ‘wrong’, that they will come and go, and also that people can choose how they deal with them. 30

HIV/AIDS counselling on the phone, ChinaDiscussing feelings with others, taking part in relaxing activities, reading about HIV, and maintaining health through exercise and good eating are a few of the ways people can help themselves through hard times. It is generally advised not to suppress emotions artificially through alcohol or substance abuse. Where available, support groups and helplines should be able to offer advice and put people in touch with local services. These groups could allay any fears or anxieties that have resulted from rumours or misinformation, and offer advice on all aspects of coping with HIV. Peer-support groups run by people living with HIV can enable those living with the virus to realise they are not alone in what they have gone through, and they might be able to offer the best advice.

With enough support from family and friends, people living with HIV and those affected can learn to manage the emotional impact that the epidemic continues to have on millions of people worldwide. While there is no single way to deal with the emotionally demanding episodes caused by HIV including diagnosis, disclosure, grief and bereavement, not to mention the continual adapting to living or supporting someone with a chronic condition, it is possible to find ways to successfully cope.

If you would like to find US or UK-based helplines or support groups in your area visit our HIV & AIDS help and advice in America page or HIV & AIDS help and advice in the UK page.

All quotations used throughout this page are from personal stories gratefully submitted to us by our readers.

 

References

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