Needs and priorities of young people with human immunodeficiency virus.
ABSTRACT To ascertain the views of young people in the UK with human immunodeficiency virus (HIV) about their health care, and to compare these views with the perceptions of nurses involved in this sector and the current social policy response.
Young people, aged 16 to 24 years, who have HIV and attend a specialist voluntary organisation and pre- and post-registration nurses attending an HIV care course were selected by convenience sampling. A cross-sectional survey was conducted by questionnaire.
Hospital-based HIV clinics and services were the favoured source of care. There was consensus among the young people that care providers should be informative and approachable, and that care provision should include help to understand issues, such as pregnancy and contraception.
Professionals involved in creating future social policy and commissioning services need to respond to young people's priorities and adapt to the patient's developing sexuality and the changing demographics of young people with HIV.
May 2013 | Volume 25 | Number 4NURSING CHILDREN AND YOUNG PEOPLE
Art & science | researchArt & science | research
SINCE THE mid-1990s and the introduction of
highly active antiretroviral therapy, the human
immunodeficiency virus (HIV) has been transformed
into a treatable, although still incurable,
A more recent development has been that
children who were vertically infected by HIV – that
is, from mother to baby – are becoming young adults.
Current treatments allow these young people to
lead an essentially normal life, albeit with some
restrictions, such as lifelong medication and caution
with sexual relationships (Hazra et al 2010).
Since the introduction of routine HIV screening in
pregnancy in 1989, the number of children infected
vertically has fallen dramatically, and more young
people are being infected horizontally through, for
example, sexual transmission (Health Protection
Therefore, the epidemiology and experiences
of young people with HIV will change over time,
reinforcing a needs-led commissioning culture
in which healthcare services will be required to
adapt to the changing needs and priorities of
this group. There are also changes occurring
in service provision, most notably an increased
focus on quality and cost of care and a move from
hospital to community healthcare provision (Miller
and Gubb 2011).
Background literature on the subject was obtained
through searching local and national policy
documents and the broader medical and nursing
literature. No time limits were applied to the search
criteria, and searches were carried out on Medline
and Embase, and the websites of government and
major voluntary organisations. The search revealed
a lack of data on care provision preferences among
this patient population.
This study was undertaken to investigate the
views of young people in the UK with HIV about
care service provision, and to identify their priorities.
By asking respondents directly for their views,
Aims To ascertain the views of young people in the
UK with human immunodeficiency virus (HIV) about
their health care, and to compare these views with
the perceptions of nurses involved in this sector and
the current social policy response.
Methods Young people, aged 16 to 24 years,
who have HIV and attend a specialist voluntary
organisation and pre- and post-registration nurses
attending an HIV care course were selected by
convenience sampling. A cross-sectional survey was
conducted by questionnaire.
Results Hospital-based HIV clinics and services were
the favoured source of care. There was consensus
among the young people that care providers should
be informative and approachable, and that care
provision should include help to understand issues,
such as pregnancy and contraception.
Conclusions Professionals involved in creating future
social policy and commissioning services need to
respond to young people’s priorities and adapt to the
patient’s developing sexuality and the changing
demographics of young people with HIV.
Adolescence, young people, communicable diseases,
human immunodeficiency virus
Edward Purssell is a senior
lecturer in child health nursing
Michael Fanner is a student
specialist community public
Both at King’s College London
Alison Barnes is head of strategy
and impact, Body and Soul,
Date of submission
July 26 2012
Date of acceptance
December 21 2012
This article has been subject
to open peer review and
has been checked using
Edward Purssell and colleagues report on a survey to determine
how nurses can best respond to care provision for adolescents
Needs and priorities of
young people with human
NURSING CHILDREN AND YOUNG PEOPLE May 2013 | Volume 25 | Number 4 21
data could be collected that would inform service
providers and help shape educational curricula.
The views of nurses attending a specialist HIV
care course were obtained to evaluate the extent
to which this group of professionals understand,
perceive and share these views.
This study was aimed at determining the views of
young people with HIV about their health care and
to compare these views with the perceptions of
nurses in this specialty, in light of the current social
Convenience, defined as non-random, patient
samples were drawn from two groups: young people
aged 16 to 24 years attending Body and Soul, a
voluntary organisation providing support for people
living with or affected by HIV, and a mixed group
of pre- and post-registration nurses undertaking
a specialist HIV care course at King’s College
London. Potential participants were approached
opportunistically, either at the adolescent services
provided at Body and Soul (young people) or after
lectures on the HIV care course (nurses), between
November 2011 and February 2012.
Data were collected using a survey that referenced
previous questionnaires used by Body and Soul
to collect service satisfaction data. The document
comprised three sections about provision,
information and priorities in health care using a
mixture of open, closed, multiple choice and ranking
questions and statements.
The resulting questionnaire was distributed to
an expert panel for validation and was piloted by
five young people with HIV before being distributed
to both participant groups. During the validation
process subjects were asked to comment on the
suitability and wording of each question, as well as
the overall content of the questionnaire.
Ethical considerations Ethical approval was given
by the King’s College London Research Ethics
Committee, who confirmed that NHS ethical approval
was unnecessary. Data analysis and interpretation
were undertaken by two researchers, one of whom
was a pre-registration nursing student and the other
a senior lecturer in charge of the specialist nursing
course. This method, however, may have resulted
in socially acceptable responses by the nurses.
Confidentiality was maintained as questionnaires
were anonymous and did not ask for any personal
details, other than data such as age, ethnic origin,
gender and HIV status, which were optional.
Neither researcher had links with Body and
Soul. Data were analysed by each researcher
and agreement was achieved with no major
A total of 74 people responded to the questionnaire,
including 31 young people and 43 nurses.
Completion rates of the questions answered
in the submitted questionnaires were good,
although four young people did not complete the
demographic questions, which may have been
because this question was located on the back
of the questionnaire and was missed.
Demographics The age and gender of respondents
are shown in Table 1. Of the young people,
22 identified themselves as black, compared
with four of the nurses; for white ethnicities,
the numbers were three and 28, respectively.
No data were collected on place of residence
or employment of either participating group.
With regards to HIV status, 21 (67.7 per cent)
and five (16.1 per cent) of the young people
answered as positive and negative, respectively.
No further medical data, such as CD4 counts or
viral load, were collected.
Table 1 Demographics of young people (n=31) and
nurses (n=43): age and gender
Young people (%) Nurses (%)
16-188 (25.8)* 0 (0)
19-21 7 (22.6)*15 (34.9)
22-24 7 (22.6)*9 (20.9)
25-27 2 (6.5)*7(16.3)
28-303 (9.7)*2 (4.7)
31-330 2 (4.7)
340 1 (2.3)
10(32.2)† 4 (9.3)†
* Respondents (n=27)
† Respondents (n=39) and (n=36) respectively
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Art & science | research
Source of HIV care When asked from where
they currently received their HIV-related care,
22 young people (76 per cent) reported that it
was primarily from hospital-based HIV clinics,
four (14 per cent) from their GP and the remaining
three (10 per cent) from other hospital service
providers. A total of 18 (62 per cent) respondents
said they would like to receive their care in hospital-
based HIV clinics, five (17 per cent) from their GP,
three (10 per cent) from a sexual health clinic and
three (10 per cent) from more than one source.
Of the 31 young people involved in the survey,
two did not respond to the last two questions. Of
those who expressed a preference, 13 (42 per cent)
responded that they would like to receive their care
from adolescent services, eight (26 per cent) chose
adult services and two (6 per cent) chose children’s
services. Although relatively few young people
received their HIV care from their GP, 20 (65 per cent)
stated that their GP was aware of their diagnosis,
whereas only 12 (27 per cent) of the 43 nurses
expected young people to have disclosed their HIV
status to their GPs.
Only three (6.9 per cent) nurses correctly thought
that young people would prefer to attend an HIV
clinic in a traditional hospital setting, although
16 (37.2 per cent) identified that most young people
receive their care in HIV clinics in traditional hospital
settings. With regards to the age-related context of
care, 21 nurses (48.8 per cent) correctly recognised
that most young people would prefer specialist
adolescent provision, 14 suggested adult services
(32.2 per cent) and two (4.7 per cent) more than one
setting. One nurse (2.3 per cent) was unsure.
Disease information Young people reported that
information about HIV was provided from various
sources, most notably HIV clinics in 25 cases
(81 per cent) and community organisations in
22 cases (71 per cent). However, 15 (48 per cent)
named friends and family, 13 (42 per cent) the
internet and 13 (42 per cent) their GP as important
sources of information, even though relatively few
received their HIV care from their GP.
When asked about where they would like to
receive information from, 19 (61 per cent) chose HIV
clinics, 17 (55 per cent) voluntary organisations and
nine (29 per cent) their GP; the internet and family
and friends were preferred by six (19 per cent)
and online chat rooms by five (16 per cent).
Nurses were more likely to think that young
people would like to receive information from the
internet and chat rooms than was the case, with
27 (63 per cent) and 20 (47 per cent) identifying
these preferences, respectively.
Priorities of care There were qualities in care
provision that were thought to be important, and
which tended to be those related to the relationship
between young people and their service providers
(Table 2). To the question about their priorities
for healthcare provision generally (Table 3),
25 (81 per cent) respondents wanted help with
understanding HIV, 24 (77 per cent) with aspects
of sexuality, 20 (65 per cent) with contraception
and 20 (65 per cent) with pregnancy. Twelve nurses
(27.9 per cent) thought that understanding HIV
and support with disclosure are important care
Table 2 Numbers of young people identifying qualities as important in healthcare
Table 3 Numbers of young people identifying priorities in human
immunodeficiency virus care (n=31)
Promotion of understanding of HIV25 (81)
Information about sex and sexuality24 (77)
Provision of condoms/contraception20 (65)
Pregnancy and HIV20 (65)
Support with emotional wellbeing20 (65)
Information about healthy eating19 (61)
Support with disclosure 19 (61)
Medication and side effects 17 (55)
Opportunities to talk to doctor/nurse about my
concerns and feelings
Advocates for me 25 (81)
Informative and helps me to understand24 (77)
Supportive and approachable 23 (74)
Available and easy to contact21 (68)
NURSING CHILDREN AND YOUNG PEOPLE May 2013 | Volume 25 | Number 4 23
priorities for young people, but did not ascribe such
a high priority to issues that affect all adolescents
such as information on healthy eating, which
24 (55.8 per cent) gave as the lowest priority, and
pregnancy which 11 (25.6 per cent) gave as the
second lowest priority.
When asked from where they currently receive
their HIV care, most young people responded
that it was from an HIV clinic in hospital, and
nearly two thirds indicated that they would prefer
to remain in this setting. This preference may
conflict with the current changes in the NHS, with
moves towards care pathways that stem from
primary care and general practice (Miller and Gubb
2011). The young people’s choice may reflect the
current pattern of service provision, but it may
also indicate a fear of stigma in the community
should diagnosis be inadvertently disclosed
(Anderson et al 2008). Neither, were directly
investigated in this study. Nearly two thirds of
the young people had disclosed their HIV status
to their GP, unbeknown to most nurses. Thus an
unfounded fear of breaching confidentiality could
be limiting interprofessional communication.
In response to a question about the age-related
care setting in which they would prefer to receive
their care, the most popular choice was that of
dedicated services for young people. There is a
growing cohort of young people transitioning
from children’s to adults’ HIV services and this
will increase as survival rates associated with HIV
improve (Foster et al 2009). There are a number of
transitions that occur during this period, including
social, educational and employment changes,
many of which are affected by, and may add to,
the challenges associated with being a young
person with HIV. For example, lifelong reception of
medication is desirable for services to be provided
in a developmentally appropriate fashion (Gleeson
and Turner 2012). But, there are organisational and
cost implications to this approach that point to
the importance of collaboration and joint working
between children’s and adults’ services.
When asked from where they would like to
receive health information, most young people
preferred HIV clinics and voluntary organisations.
Only a few respondents opted for online services
such as chat rooms, perhaps reflecting difficulties
in accessing reliable or appropriate information
from this unregulated source. The increasing
use of online and mobile technologies by individuals
and health services may change this view over
time. The importance of recognising the limitations
of the internet as a source of information is
shown by research from UK telecommunications
regulator, Ofcom. When asked, 27 per cent of
16-24 year olds agreed with the statement: ‘I think
that if they have been listed by the search engine,
[these] websites will have accurate and unbiased
information’, and 13 per cent reported not worrying
about accuracy or bias (Ofcom 2012).
The popularity of community organisations as
sources of information may reflect the attendance
of young people at such organisations, and supports
the move towards joint working arrangements with
the voluntary sector (Madge et al 2011) and wider
user involvement (Hamblin 2011).
When young people were asked what they
wanted from HIV services, the top requirement
was that service providers should include
opportunities for them to gain a greater
understanding of HIV. The high priority also
afforded to information about sex and sexuality
emphasises the need for sexual health education,
particularly as a significant number of young
people with HIV are sexually active (Koenig et al
2011). Suboptimal use of condoms puts young
people at risk of sexually transmitted infections,
transmission of HIV to others, and unplanned
pregnancy (Moses and Dhar 2012). An individual
knowingly living with the infection and aware of
Most respondents wanted to be perceived
and treated as normal adolescents with
their more general needs being paramount
drugs have made the human
a treatable disease
Science Photo Library
May 2013 | Volume 25 | Number 4NURSING CHILDREN AND YOUNG PEOPLE
Art & science | research
how HIV is transmitted, who has sex with someone
who is HIV-negative without a condom and
subsequently transmits it to that person, may be
found guilty of reckless or intentional transmission
(National AIDS Trust 2010).
Multiple answers were given to the question
about which qualities are important in care
providers. The three favoured qualities were:
■■ Being informative and understandable.
■■ Being supportive and approachable.
Most respondents wanted to be perceived and
treated as normal adolescents (Hamblin 2011)
with their more general needs being paramount
– this population has traditionally been expected
to adapt to health service providers (Gleeson and
Limitations This study has limitations; in particular,
it was based on a convenience sample of young
people attending one voluntary organisation, and a
group of pre- and post-registration nurses attending
a specialist HIV course at a single university.
The data presented here offer an insight into the
needs and priorities of young people with HIV, and
Implications for practice
■■ Specialist HIV clinics and adolescent services are
the favoured source of care and information.
■■ Priorities include understanding HIV issues and
treatment, sexuality, pregnancy and contraception.
■■ Healthcare professionals should be informative,
approachable and prepared to advocate.
■■ Commissioners and care providers should adapt
to the patient’s developing sexuality, the changing
demographics of young people with HIV and the
changing patterns of healthcare provision.
provides those offering care and education evidence
on which to base their provision, as well as influence
future social policy decisions.
From a clinical perspective, it is important
to respond to the needs of this group and that
decision makers understand and share their
vision of care.
Some themes emerged which might help
inform practice. In particular, young people valued
the ‘human’ side of care provision, emphasised
the importance of their sexuality and are more
traditional users of healthcare services than some
Conflict of interest
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