The current project offers insights into the challenges experienced by young people who are affected by HIV and the barriers they face in terms of their emotional well-being. Although this project relies on a small sample size, the accounts shared by the participants of this research may contribute something of value to clinicians working with those affected by HIV as well as service users themselves and their parents or carers. As such, the following section will make tentative
recommendations in terms of clinical practice based on issues arising from the data. Services for HIV negative siblings
The current project highlighted that those siblings who are HIV negative are experiencing high levels of emotional distress associated with HIV. The
understanding that the healthy sibling of a young person diagnosed with a chronic illness is at risk of psycho-social difficulties is supported by a wealth of literature pertaining to healthy siblings of chronically unwell children (Barlow & Ellard, 2006; Waite-Jones & Madill, 2008; Fleary & Heffer, 2013; Alderfer, 2010). It was evident from the accounts presented by the HIV negative group that emotional difficulties were an ever present and destabilising factor in terms of the psychological well- being of these young people. This highlights a key need for support to be provided for the HIV negative siblings of young people who are HIV positive. It is also vital that parents, carers and clinicians collectively bear in mind the impact of HIV for both siblings and not just the young person receiving a diagnosis. Therefore a clinical implication of this research is that services that support the needs of HIV positive young people also offer a service to the HIV negative siblings where a need
is identified. It is understood that voluntary, charitable and third sector organisations do offer supportive services for HIV negative siblings however this is not the norm and services would benefit from considering the provision of such support on a wider scale in order to promote emotional well-being for young people affected by HIV and their families. Guidelines regarding the care of HIV positive young people are very well documented (BHIVA, 2011; CHIVA, 2013) however specific guidance regarding the care of HIV negative siblings is lacking. This is understandable given that services are commissioned and funded to support those who are physically unwell in terms of receiving a diagnosis of HIV, however this leaves a gap in service provision for those who may require psychological support. Although it is
recommended here that services be expanded to cover HIV negative siblings, it is also acknowledged that this is fraught with multiple difficulties around where the funding for such resources would come from, what the provision of such services would look like, and whether this would be a regional or local service that currently a financially struggling NHS would find difficult to implement. Therefore, although this need is identified, it is acknowledged that this would be a challenging practice to implement for many reasons. At present HIV negative siblings experiencing
psychological distress are able to access their GP or be sign posted to child and adolescent mental health services should this be indicated.
Early disclosure for HIV positive and negative young people.
This project highlighted that non-disclosure of HIV to the HIV negative siblings in some cases was cited by the individuals as a causal factor for emotional distress later in adolescents. In the first instance it is perhaps prudent for clinicians to consider making parents and carers aware of the potential difficulties that face both HIV positive and HIV negative young people so that they may remain mindful and attentive to the needs of those young people, encouraging, where possible, that parents and carers inform all children of HIV. This initiative may compliment the WHO (2011) guidance suggesting parents and cares inform HIV positive children of their diagnosis as soon as possible. Although this does not cover HIV negative young people, it is perhaps a clinical implication of this research that HIV negative children are also informed of HIV within the family as early as possible in order to protect from difficulties associated with non-disclosure in later adolescents. HIV
negative participants of the current project explored their upset towards feeling mistrusted by the family and the challenges they faced from late disclosure. Although the WHO suggest that early disclosure is a protective factor for later difficulties with HIV positive young people, it is also acknowledged that for many reasons such as fear of causing distress in young people, or fear of the consequences of HIV related stigma, parents and carers struggle with anxiety relating to informing young people of HIV within the family. Although it is suggested here that young HIV negative siblings be informed of HIV within the family, this must be balanced with the individual needs of all children and protecting other young people who do not wish their siblings to be aware of their diagnosis. Perhaps services could prioritise supporting families to disclose HIV in the family setting at the point of diagnosis and again making families aware of the benefits and difficulties associated with this.
Facilitate open communication within families
A key finding of this project was that HIV appears to be a taboo subject within the family often leaving young people feeling unable to explore their concerns or worries associated with HIV for fear of causing upset for family members, in particular parents and carers. The notion of HIV remaining a taboo subject within the family setting is supported by the literature (Rydstrom et al. 2013). This lack of communication understandably places young people at risk of psychological
difficulties if these anxieties are unable to be identified, understood and explored and indeed the literature consistently reports that increased mental health difficulties are observed in populations affected by HIV (Mellins & Malee, 2013; Nkomo, Kafaar & Kelly 2007). As such, a clinical implication of this project is that clinicians working with those affected by HIV encourage and facilitate open communication between family members. This may help those affected by HIV increase their access to support and potentially mitigating factors associated with poor mental health such as isolation and lack of emotional support. This may improve low mood and anxieties that can be explored and challenged within the family. On the other hand, of course, forcing conversation around HIV would potentially be equally unhelpful for many families, depending upon the context and the presence or absence of additional stressors. Clinicians may consider regularly asking service users during routine
appointments about the nature of support they are receiving and sign post to external support services where necessary. First and foremost it is vital that parents and carers understand the difficulties that are associated with avoiding the topic of HIV within the family, allowing those families to individually take advice to inform decision making around HIV.
Cultural experiences of stigma
A particularly interesting feature of some interviews arose from those participants who had come to live in the UK from Sub-Saharan Africa, thus experiencing HIV related stigma across different cultures. Those participants discussed the cultural disparity between the felt stigma in both cultures, clearly reporting that HIV related stigma was greater in the UK. This finding may be surprising for some as one might assume that in a western society where access to healthcare is greater and easily accessible, in addition to the economic and security benefits of living in the UK, that the experience of HIV would be better both from a physical and psychological view point. This did not appear to be the case.
Nonetheless, this finding is in support of the literature pertaining to cultural differences in HIV related stigma suggesting that stigma associated with HIV is considerably greater across different cultures (Ojikutu et al. 2013; Genberg et al. 2009). Additionally, Genberg et al. (2009) also assert that higher rates of stigma towards HIV were found in countries with a lower prevalence for HIV. As such, the UK has a significantly lower prevalence rate of HIV in comparison to Sub-Saharan Africa and the current project therefore supports those findings. Perhaps the
treatability of HIV and the success in managing the condition in the UK has led to HIV patients and their families being more able to conceal this and therefore less open to discussing it. As a result of this it is possible that the prevailing stigma attached to HIV in the 1980’s remains unchallenged. Indeed the notion that despite medical advances the stigma towards HIV remains a key challenge for those affected by HIV, is supported by the literature (Stackpool-Moore et al. 2013). As such, it could be argued that although in terms of healthcare HIV is better treated in the UK, the psychological experience is exacerbated and worsened by the lack of support and the marginalisation of those affected within western culture. This is reflected in most participants’ experiences of HIV as a social and political issue rather than a physical
health issue. A clinical implication of the current research would therefore be a recommendation that clinicians remain mindful of the impact of a cultural shift in the intensity of the socio-political consequences of HIV related stigma. This is
particularly relevant given that 58% of those diagnosed with HIV in the UK are of black-African ethnicity (Public Health England, 2015). Therefore, a portion of those most affected by HIV (those who were not born in the UK) may need support in managing any potential changes in the impact and effects of stigma. This may allow for a greater understanding of the challenges experienced by patients who came to the UK from a different culture and promote a more targeted and individualised package of care that truly benefits the patient and their families. Arguably the cultural difference felt in stigma towards HIV are experienced by many others affected by HIV and promoting an understanding of this is of benefit to both services and their service users.
4.7 Implications for future research