Issue 20.1

Editorial 20.1

Welcome to this issue of HIV Nursing for Spring 2020. CHIVA are delighted to have been asked to guest edit this issue featuring articles covering topics relating to young people living with HIV.

Amanda Ely & Amanda Williams
Children's HIV Association, CEO & Chair of CHIVA

Exploring facilitators and barriers to condition self-management in young people with perinatal HIV

Children with perinatal HIV are now more likely to survive into adulthood. The ability of young people to manage their HIV condition can determine the success of their transition between paediatric and adult care. This article explores the skills and knowledge necessary for young people to self-manage their perinatal HIV and the associated facilitators and barriers to the developmental process. Eight young people with perinatal HIV were interviewed through the Children’s HIV Association. The skills of adhering to a medical regimen and communication about their perinatal HIV were facilitated by decreased involvement of caregivers in condition management alongside an increased engagement of the young people with healthcare providers, and the presence of a strong support network. Barriers to skill development included negative experiences, information gaps and motivation loss. Understanding what aids or impedes the self-management developmental process highlights opportunities for healthcare providers to ensure this ability is developing appropriately.

Chinma Onyewuenyi, Amanda Ely, Joelle Mak
London School of Hygiene and Tropical Medicine,CHIVA,CHIVA

Experiences of transition to adult care and readiness to self-manage care in young people with perinatal HIV in England

Background: There are few data on young people’s own experiences of transferring from paediatric to adult care, or readiness to self-manage care. Methods: A total of 132 young people living with perinatal HIV, aged 14–25 years, answered questions about transition experiences. Results: Of the participants, 45 (34%), with a median age of 16 (interquartile range [IQR] 16–17), were in paediatric care, of whom 89% reported that transition discussions had begun, at median age 15 (IQR 14–16) years. Young people in adult care were more likely than those in paediatric care to self-manage appointments (90% vs 42% respectively, P < 0.001), and know their antiretroviral therapy (ART) drugs (55% vs 37%, P = 0.033). Knowledge of most recent CD4 T cell count/VL was slightly better for those in adult care (48% vs 31%, P = 0.059); naming side effects of ART was similar (71% vs 60%, P = 0.119). Conclusions: Transition discussions occurred before movement from paediatric to adult care. Further education around ART, potential side effects, and CD4 T cell count/viral load knowledge is required.

Kate Sturgeon, Hannah Castro, Marthe Le Prevost
MRC Trials Unit at UCL,UCL,UCL

‘When they can see that the young person is healthy you can see joy on their faces’: a journey of a young person living with HIV and their clinical experience

An interview with a 19-year-old young man with perinatally acquired HIV and his Paediatric Specialist Nurse (PSN) explores the life experiences of this young person and reveals the significance of the clinical relationship with his nurse in his provision of care. Hearing both the young person’s and the nurse’s perspectives on aspects of this relationship facilitates a deeper understanding of the lived experiences of young people with HIV.

Abi Carter
CHIVA Participation Officer

A generative analogy to help discuss prophylaxis with children and young people

In the field of HIV medicine, ensuring that patients take their medication on a daily basis in order to suppress the replication of the virus is a crucial part of HIV prophylaxis. In my practice as a clinical psychologist working with people living with HIV who acquired HIV as adults, as well as with children and young people who were born with HIV, it is apparent that the knowledge of HIV replication and how antiretroviral medication works can be very variable.

Alex Accoroni
South London and Maudsley NHS Trust, UK

CPD: Transition for adolescents living with HIV

Abstract Transition takes place at a time when young people are experiencing a period of developmental and social change. It is essential to understand the family experience of HIV for young people and the medical and social complexities of having grown up with HIV. Experiences of young people living with HIV in the UK are discussed, including recent data on outcomes post transition, along with experiences of transition for young people living with HIV in other countries and with other chronic illnesses. Challenges and barriers to successful transition and effective approaches are explored. Practice tools and approaches which support successful transition include: assessments of readiness; multidisciplinary support; early preparation; empowerment of young patients; and engaging professionals in adult settings as named ‘transition leads’. Establishing successful transition can be critical to ensuring long-term health for young people with perinatally acquired HIV, requiring structured provision, clear processes and good communication between paediatric and adult clinics.

Amanda Ely, Julia Kenny, Amanda Williams
CHIVA, CEO,Evelina London Children's Hospital,London North West University Healthcare NHS Trust

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