Not so alone: the importance of relationships in growing up with HIV

HIV Australia | Vol. 12 No. 1 | March 2014

By Angela Miller, Asha Persson and Christy Newman

ANGELA MILLER, ASHA PERSSON and CHRISTY NEWMAN look at the relationship needs of HIV-positive young people.

While there are over 3.3 million children under the age of 15 estimated to be living with HIV worldwide,¹ there are only around 80 children living with HIV in Australia.²

While most people would rightly see this comparatively low figure as a great success, it also creates particular challenges for the young people themselves, who are scattered throughout Australia.

In a country of over seven-and-a-half million square kilometres,³growing up with HIV can signal difference, aloneness and social isolation.

Many young people have been able to overcome these obstacles through the support and benefit of relationships, both personal and professional, to assist them in the management of living with HIV and enhancing their overall capacity.

This article provides a brief reflection about some of these familial, peer and health care provider relationships.

It primarily draws on Angela’s personal experience of working with this population, but also on findings from the authors’ collaboration on a recent study of young people growing up with HIV in Australia, which was conducted by the Centre for Social Research in Health (UNSW) in partnership with the Paediatric HIV Service at the Sydney Children’s Hospital.⁴

As a social worker at the paediatric HIV service from 2003–2013, Angela observed with interest how relationships of all types play an important role in the lives of these young people.

Despite significant medical advances, the multi-generational factors in paediatric HIV remain unique: many young people with HIV have lost one or both parents to the disease and some have lost a sibling.

Whilst the understanding and support from family members who are also HIV-positive can be incredibly helpful, some young people also experience challenges with these dynamics.

Young people may have taken on the early experience of their parent’s diagnosis, directly impacting their own thoughts on disclosure, stigma and shame.

Some have witnessed the ill health of family members, and subsequently worry about their own future.

Despite the desire to disclose their HIV to a friend, some feel pressure not to, as this may automatically lead to the unwanted disclosure of their mother’s HIV.

For some, the need for privacy will impact on all aspects of their life. Having attended the funeral of one young person, Angela recalls an open discussion with several of the young person’s HIV-positive friends following the wake.

Other than immediate family, Angela and the few friends from camp had been the only people at the funeral aware of the young person’s HIV status. Others were aware only of the secondary condition which had led to her death.

As her school friends read a lovely eulogy and spoke of the strength of their friendship, the young people living with HIV sat anonymously, quietly dealing with their own grief.

Afterwards, they spoke about whether this too would be their future. They also pondered, as one young person put it, ‘how these people can speak about their close relationship when they don’t even know about the biggest thing that affected her?’

All too aware of the impact of the HIV diagnosis on their friend’s family, the group supported each other through this difficult time and pondered whether there will come a time when they themselves might feel comfortable to be public about their health.

Poignantly, the loss of their friend and the added difficulty of the funeral allowed the group to strengthen their bond with each other.

So, is HIV enough of a commonality in young people to create a bond regardless of other factors?

International research suggests that young people with HIV feel that they can manage better if they have friends who share their condition.⁵

As our own recent research study reveals, many of the young people attending the yearly Camp Goodtime and the Positive Kids Camps would agree with this finding.

Knowing other HIV-positive peers helps young people to deal with the associated challenges they face: feeling different, keeping the secret, managing medications, preparing for relationships and disclosure, managing loss and more.

Interestingly, in our interviews with young people in Australia living with HIV, as well as with clinicians working with this population, a consistent theme across both groups was the desire of the young people to be and feel ‘the same as everybody else’, juxtaposed by opposing feelings, such as feeling the burden of secrecy, fear of disclosure and feeling different.⁶

So, as a group of young people gathers on the grass at camp after a day of getting to know one another, some will sit with their backs to each other, some will need to bounce a ball or play with a stick or scribble on paper, some will need to look disinterested and bored, almost waiting for the ‘others’ to give permission to be interested.

Others will sit tensely, watching for cues about what to do. If the facilitator is able to respond to this group dynamic by gradually introducing ideas to externalise and normalise some of the thoughts leading to these emotional reactions, and then ask for input from the group, group support naturally follows.

On many occasions when this technique has worked, the change in the demeanour and visible relief on the faces of new participants has been remarkable.

As one young person commented about the Positive Kids Camp:

‘I have somewhere I belong … and it’s a wonderful feeling’

– (World AIDS Day interview, 2006).⁷

And in one of the interviews conducted for our study, a young person said of camp:

Oh, such an important, such a pivotal point in my, my life having people around you that understand and being able to cry, and remember people in the past, and be able to talk about medicine and side effects without having to explain. It was the one time where you felt like part of something.

After camp, participants return to their homes throughout Australia and New Zealand, hopefully with the knowledge that they are indeed not as alone or different as they had previously thought.

Whereas previously these peer relationships were only able to be developed though biannual face-to face-visits, young people can now achieve ongoing connection and support via social media, which for some has had a great impact on their experience of social isolation and ‘aloneness’.

The strength of relationships with their health care providers may also impact on young people’s ability to manage their HIV.

Frequent in-depth contact with a paediatric service from an early age, will allow many young people to develop strong links and trusting relationships with their health care professionals.

While this can be very helpful in sustaining engagement, it can also create dependency and a sense of responsibility (both positive and negative) for both parties.

Paradoxically, whilst health care transition from paediatric to adult services aims to be a smooth process which is completed over time, its peak comes at an age when so many other factors are impacting on young people.

As life becomes overwhelming, HIV may slide down the priority list for many young people and, as a result, both medication adherence and engagement with health services may be affected.

Young people may be more likely than ever to disengage from services at the time when they may need them the most.

Adult service providers may therefore be starting the relationship from a difficult position – aiming to develop a supportive and trusting relationship with the young person in these challenging circumstances.

Our interviews with clinicians here in Australia made note of these challenges and the need to provide care beyond the ‘usual clinical interactions’.⁸

It is reassuring to note that in what can be a potentially rigid medical model, focus can be placed on the development of clinician/patient relationships to ensure that successful, ongoing and individualised care is achieved.

This brief reflection by no means intends to simplify the nature of relationships in growing up with HIV, which no doubt have many layers and complexities.

Rather, it intends to provide some fuel for thought about the importance of not underestimating the power of relationships of all kinds for young people living with HIV.

We hope that our forthcoming articles reporting on the views of young people themselves will contribute to our understanding and appreciation of their experiences, including the important role of relationships.

References

1 UNAIDS. (2013). Global Report: Epidemiology Slides. Retrieved from: www.unaids.org

2 Miller, A., Ziegler, J., Palasanthiran, P. (2013). Paediatric HIV in Australia: 30 years of a changing landscape. HIV Australia, 11(1), 25–28.

3 Australian Government Geo Science 2010. Retrieved from: www.ga.gov.au

4 This study was partly funded by a 2013 Gilead Fellowship and partly by the Australian Government Department of Health.

5 Lam, P., Naar-King, S., Wright, K. (2007). Social Support and disclosure and predictors of mental health in HIV- positive youth. AIDS Patient Care and STDs, 21 (1), 20–29.

6 Persson, A., Newman, C., Miller, A. (in press). Caring for ‘underground’ kids: Qualitative interviews with clinicians about key issues for young people growing up with perinatally acquired HIV in Australia. International Journal of Adolescence and Youth (accepted 13 November 2013); Please contact the authors for additional forthcoming articles from this research study.

7 Radio National. (2006, 1 December). Life Matters: ‘Positive Teens’. ABC radio.

8 See reference 6.

Angela Miller was a Senior Social Worker with the Paediatric HIV Service at Sydney Children’s Hospital from 2003–2013 and is currently a Senior Social Worker/Counsellor at the Short St Sexual Health Centre.

Dr Asha Persson is a Research Fellow at the Centre Social Research in Health, University of New South Wales.

Dr Christy Newman is a Senior Research Fellow at the Centre for Social Research in Health, University of New South Wales.