Analysis of both groups

This section will outline an analysis of the data as a whole, offering a synthesis of the information elicited from all 10 interviews in an attempt to describe the overall experiences as described by the participants of this project. A theoretical formulation will be provided and discussed, capturing the essence of the participants accounts as described previously.

10 young people participated in this research project consisting of 5 sibling pairs in which one was HIV positive and the other was HIV negative. Analysis of the data at a group level (HIV positive and HIV negative groups) revealed strikingly similar themes. This is perhaps unsurprising considering participants were encouraged during interviews to think about the broader family experiences, including familial relationships, as well as their own. As such, similar patterns emerged given that participants were part of the same families and were describing a similar phenomenon simply from a different perspective. Despite this, participants’ personal experiences and methods of managing the impact of HIV also appeared to overlap suggesting that to some extent there may potentially be a shared journey of HIV, albeit an individual and ‘lonely’ journey for participants. It appears that HIV was experienced in similar ways by both HIV positive and HIV negative siblings at the individual, family and societal level.

3.4.1 Theoretical formulation

Using Grounded Theory analysis a theoretical formulation was constructed for both participant groups. Both formulations captured the unique processes young people with HIV in the UK today employ in order to manage the psychological factors associated with HIV. Both groups reported very similar strategies and experiences of utilising these. According to participants, the difficulties and challenges associated with HIV are no longer of a physical nature given that physical health in the context of those receiving HIV treatment was considered to be excellent, suggesting those young people diagnosed considered themselves very healthy but also acknowledging concerns for the future too. The difficulties experienced were psychological in

nature. Participants describe the need to navigate differing social pressures and psychological barriers to well-being, inflicted upon them at different levels; the individual, the family, the romantic, the community and the society level. Each distinct level presents unique and on-going pressures for young people affected by HIV to navigate. Despite both HIV positive and negative siblings reporting benefits associated with HIV and feeling HIV is normal for them, they remain cautiously aware that the boundary outside of the family remains unsafe and threatening. This theoretical formulation is depicted in the diagram below shown in Figure 15. The theoretical formulation embraces the interacting processes as described by all

participants, but also demonstrates the pressures placed on HIV positive and negative siblings in parallel to those young people stepping out into those domains e.g.

romantic relationships and society and trying to navigate the challenges and pressures in those areas.

Family Individual Romantic Community Society Family Romantic Community Society

3.4.2 Description of the inclusive theoretical formulation Individual

The majority of participants reported an internal conflict resulting from many felt pressures associated with HIV. Examples include but are not limited to;

 ‘I need support’ vs. don’t upset others

 longing for openness vs. withdrawal from others

 support my sibling but don’t talk about HIV and upset them  I feel guilty but I am also relieved I don’t have HIV

 I am normal vs. I am abnormal

Participants attributed many of these daily challenges to the stigma they felt came from an external perspective. For example, parents felt anxiety relating to their children’s safety and well-being and therefore placed pressure upon both siblings to maintain an air of strict secrecy that became both comforting and frustrating for participants. The young person was then responsible for managing the pressures placed upon them and in some cases they had internalised this stigma e.g. “I am dirty” or “I’m the mutant”.

Family

Participants reported significant pressures within the family. It was discussed during interviews that the families of the participants tended to distance themselves from the topic of HIV and this was rarely discussed within the family. This created pressure for both siblings to avoid ‘causing upset’ to family members and

maintaining the notion that discussing HIV is not only bad but that this is unhealthy for family well-being and relationships. Despite this, it appears that these conditions facilitate, in most cases discussed, the strengthening of the bond between siblings who find ways, where possible, to support each other. Disclosure anxiety based on the perceived threat of social attitudes towards HIV appears to be shared by the whole family and participants found this protective and nurturing in terms of family dynamics.

Although this is understandably more prominent for the HIV positive sibling group it is not without complication for the HIV negative siblings who often reported guilt associated with forming romantic relationships themselves or anxiety regarding the potential for romantic partners of their HIV positive siblings to expose HIV and put the family at risk of perceived rejection. HIV positive participants reported that this domain heightened the sense of being abnormal particularly given their age and desire to explore their sexuality which can be restricted due to HIV.

Community

Participants from both groups reported experiences of hearing friends at school or in other groups making fun of HIV and perpetuating this stigma. This presented a challenge in that participants felt responsible to undermine inaccurate and negative perceptions but in some cases felt powerless to do so fearing that others might wonder about the origins of their HIV knowledge, again placing them and their families at risk.

Society

This level refers to the overarching societal attitude towards HIV which participants of this research found to be negative in nature. Participants from both groups reported reading stories in newspapers around HIV or hearing jokes on television which were demeaning and factually inaccurate. The difficulty with such an engrained and stigmatised attitude at this level is that this presents a systemic and on-going problem for siblings and their families in that this exerts pressure and influence on all other systems which is not conducive of psychological well-being for families affected by HIV.

3.4.3 Summary

Overall participants report a deeply complex interplay between the external society and the internal self, the complexities of which are difficult to reduce down to a simple theory. However, on the whole, it would appear that young people affected by HIV today are able to adjust and manage well. The difficulties do not appear to be located within the person but rather externally. Any difficulties that arose for participants appeared to have their origins in a system external to them. Participants were functioning very well given the pressures placed upon them.