National HIV Nurses Association

11th Annual Conference National HIV Nurses Association

Abstracts 2009

• Oral Abstracts
• Poster Abstracts

01 - The complexities of provider-initiated routine HIV testing and counselling: the experiences of nurses in Nairobi, Kenya.
02 - A study examining the experiences of patients who attend for medical investigation during acute HIV seroconversion.
03 - A qualitative study to explore why individuals who are late presenters with HIV infection do not test sooner.
04 - Hepatitis C infection in HIV-positive gay men – beyond statistics.
05 - Testing HIV positive during pregnancy – preliminary results of a qualitative study
06 - Growing older and living longer with HIV-1.
07 - Palliative care in the Ukraine: results from the evaluation of a training programme for health care professionals.
08 - The uptake of sexually transmitted infection (STI) screening and incidence of STIs in the Barts and the London SPARTAC cohort.
09 - Changes in body composition and physical functioning in response to an exercise referral programme for males living with HIV/AIDS.
10 - Education, education, education!
11 - The lived experience of HIV and hepatitis C virus co-infection: a phenomenological study.
12 - Understanding the perspectives of patients on user involvement group (UIG): the implications for holistic nursing care and management of people with HIV/AIDS as a chronic condition.

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Abstract O1

The complexities of provider-initiated routine HIV testing and counselling: the experiences of nurses in Nairobi, Kenya

C Evans1, E Ndirangu2 1School of Nursing, Nottingham University, UK 2Aga Khan University, Nairobi, Kenya

Introduction:
Only 11% of the population in sub-Saharan Africa have been tested for HIV in spite of high population prevalence rates. In Kenya, the Government has been rolling out a policy of routine provider initiated HIV testing and counselling (PITC) since 2005. The public health rationale for PITC is clear. However, a number of concerns have been raised, focusing on challenges of implementing PITC in a context of human and health service resource shortages and severe social stigma. Key concerns focus on whether/how informed consent, privacy and confidentiality will be upheld in overstretched health care settings, and whether appropriate post-test counselling, treatment and support will be provided to all those who need it. Nurses are the main professional group involved in HIV testing. It is important therefore to understand their views and experiences of PITC implementation.

Research aims and methods:
The research aims were: (i) to explore nurses’ views on routine provider-initiated HIV testing and counselling (PITC), and, (ii) from a nursing perspective, to identify the challenges and facilitators of good practice in PITC implementation. A qualitative approach was adopted whereby 15 interviews and 2 focus groups were conducted with nurses working in Government health facilities in Nairobi. Data was analysed thematically.

Results:
On the whole nurses welcomed PITC. However, they were concerned that the reduction of emphasis on pre-test counselling had a negative impact on the patient experience of diagnosis and follow up. Maintaining confidentiality was a key challenge in a context of high stigma (including amongst nurses) and lack of privacy. Nurses found breaking bad news and encouraging disclosure to significant others to be particularly stressful. The workplace environment had a major impact on nurses’ ability to provide good quality care. Key factors included a lack of time, lack of space, lack of staff, unclear professional roles, lack of support from supervisors and other professional groups, and a target driven approach which emphasised quantity of tests done over quality. Together, these factors contributed to a sense of de-motivation and burn out.

Conclusions:
PITC implementation processes need to factor in human resource and workload requirements as well as workplace culture. On-going training, monitoring and clinical supervision are essential. There is a need for more research on the patient experience and the patient journey through PITC into follow up services.

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Abstract O2

A examining the experiences of patients who attend for medical investigation during acute HIV seroconversion

S Mullaney Imperial College London, UK

Introduction:
Where there is a potential for HIV infection, early diagnoses are crucial to overall individualised healthcare outcomes. Detailed medical assessment, identification and intervention at this vital stage may limit transmissibility to the public through medical and behavioural interventions.

Objective:
To assess and determine if community health practitioners may be missing out on early interventions when not including the potential for Primary HIV Infection (PHI) in their differential diagnosis of those patients later identified as HIV seroconverters.

Methods:
A questionnaire was administered to patients with documented PHI who were also participating in a clinical trial at HIV seroconversion. The questionnaire focused on the patient’s initial healthcare presentation at PHI and detailed the chronology of their first recognition of what is now known to be their HIV seroconversion, their initial presentation to a healthcare professional and blood and genitor-urinary tests from their first visit at St. Mary’s Hospital to highlight the importance of early interventional management.

Results:
38 HIV seroconverters completed questionnaires. 100% were male, 92.1% Caucasian and 89.5% identified as Homosexual. 44.7% were seen initially at the GUM clinic and 36.8% attended their GP with symptoms of PHI. Healthcare professionals raised the possibility of PHI 42.1% of the time and were significantly more likely to query this if patient stated night sweats as a symptom. There was no significant difference between age groups and pre-existing knowledge of PHI nor between age groups and where the initial healthcare assessment occurred. There was no difference between healthcare facilities attended and whether or not the possibility of HIV infection was brought up at this consultation; however, there was a marginally significant correlation between follow-up appointments being made and symptoms suggestive of PHI. There were variations among age groups between symptomatic presentation, delays in seeking healthcare and decisions to test for HIV. There were strong statistical correlations between disclosure of MSM status and type of health facility attended, with participants attending GUM clinics and GPs more likely to disclose.

Discussion:
A significant number of healthcare professionals, and presenting patients, were not aware to the possibility of PHI at the patient’s presentation, where it was neither mentioned nor explored. Early identification and intervention at PHI is imperative in order to limit individual immune disability and reducing the potential transmissibility to overall public health. New strategies to raise awareness of individual HIV risks, improve the timing of HIV diagnosis and presentation, as well as to capture potential transmission networks are needed.

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Abstract O3

A qualitative study to explore why individuals who are late presenters with HIV infection do not test sooner

L Dowson1, N Perry2, C Kober2, T Maher2, D Richardson2 1Brighton and Sussex Medical School, UK 2Brighton and Sussex University Hospitals NHS Trust, UK

Background:
Although initiatives are underway in the United Kingdom to diagnose HIV infection early, late presentation is still a major issue with 33% of those infected with HIV in England unaware of their postivie status. Late presentation results in serious health complications for the individual and has implications for society including high costs and increased rates of transmission. Intervention strategies in the UK have aimed at increasing testing opportunities but still a significant proportion of those with HIV infection either decline testing or continue to test late.

Objectives:
This study aims to identify ideas and themes as to why testing was not carried out earlier in men who have sex with men (MSMs) who presented with late HIV infection.

Methods:
Semi- structured interviews lasting up to one hour were carried out with 6 MSMs who presented late with a CD4 cell count of less than 200. Each interview covered themes including; reasons for not testing, past sexual history and risk behaviours, understanding of HIV and its transmission, attitudes towards HIV and testing. A structured framework analysis approach was used to analyse the data collected and generate themes and conclusions to the research question.

Results:
Fear of HIV and of a positive diagnosis was identified as a main theme. Low perceived risk for contracting HIV was also stated as a reason for none testing. All participants reported having a good understanding of HIV and its transmission, yet some expressed surprise at their diagnosis even though admitting to taking part in risky behaviours in the past. Previous HIV testing was either non-existent or sporadic at best. None of the subjects had discussed an HIV test with their GP before symptoms occurred and all stated that an offer of testing would have been taken up. Other subthemes identified included feeling healthy and therefore not thinking a diagnosis was necessary, feeling unable to cope with a positive diagnosis and a lack of understanding and knowledge about the implications of a late diagnosis.

Conclusions: Late presentation with HIV infection continues to be a problem in the UK despite government initiatives to expand opportunities for testing. Reoccurring themes for late testing were a low perceived risk for HIV infection and a fear of HIV and a positive diagnosis. A more pro-active approach by healthcare professionals, especially in primary care, may result in earlier testing.

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Abstract O4

Hepatitis C infection in HIV-positive gay men – beyond statistics

J Mojsa, FJ Greenham, S de Croy Body Positive North West

Introduction:
Whilst much has been written regarding progression of HCV there is little describing the lived experience of gay men who are co-infected with HIV & HCV.

Objectives:
The research key objective was to describe the experience of six men attending Body Positive North West’s Gay Men’s Space, a group for gay men living with HIV who may also be diagnosed with HCV. Another key research objective was to capture the stories of the journey from diagnosis, through treatment and finally self understanding. The protocol and research parameters were drawn up during 2008 following an awareness of the increase in prevalence nationally and internally of co-infected gay men and the lack of qualitative data exploring the psycho- social needs of the cohort.

Method:
Using a small scale, in depth narrative inquiry, BPNW collected the rich narrative stories of lived experience of co-infection with HCV and HIV – going beyond the statistics. Following a semi structured interview schedule, the researchers worked with whatever material emerged for the participants. Any significant emerging themes were allowed to unfold, and thus the researchers gained qualitative narrative material to analyse.

Results:
The open ended questions included: awareness of hepatitis C; sexual behaviour; drug use; hepatitis diagnosis; treatment offer and treatment uptake; treatment experience; responses from health care professionals and other gay men; self-perception; isolation and finally the experience of living with an additional chronic condition. A total of 6 in depth interviews yielded rich material and several interesting themes emerged. Some of these probably support existing understanding of co infection, but the stories and narratives described by the participants also raise issues about the levels of support that can be given to gay men. More importantly, participation in the research meant that the men were both valued and heard.

Conclusion:
Feedback from the research suggests the importance of a well being approach to health. In particular, a number of significant points are raised for service providers around service provision, particularly in the field of relational, emotional, mental and spiritual support. Finally, the presentation style of the research was also important. Using a performative social science research style to both enhance and disseminate the research findings, the presentation delivering the findings brought to life the voices of the respondents. The PowerPoint deliberately had speech bubbles indicating when the voices of the men were to be heard. The audience were then drawn into hearing those voices, as represented through the presenter.

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Abstract O5

Testing HIV positive during pregnancy – preliminary results of a qualitative study

C Kelly, F Alderdice, M Lohan, D Spence School of Nursing & Midwifery Research Unit, Queen’s University Belfast

Background:
While still a relatively low seroprevalence region, Northern Ireland has experienced a dramatic increase in heterosexually acquired HIV diagnoses in recent years, influenced in part by migration but also earlier detection through the introduction of antenatal screening, resulting in substantially more HIV positive pregnant women being identified than were ever anticipated or planned for. This study, currently in its final year, aims to explore the real life contexts in which men and women, affected by a diagnosis of HIV, make reproductive decisions and their experience of pregnancy, childbirth and the care they receive throughout this journey. In particular, the study aims to explore the experiences from the perspective of HIV positive men and three groups of women, those who were aware of their diagnosis before becoming pregnant, those who learn of their diagnosis during antenatal screening and HIV negative women choosing a pregnancy with a HIV positive partner.

Method:
A qualitative longitudinal methodology was chosen in order to capture biographical changes and continuities in individuals’ experiences and health and social care needs as participants moved from one stage of the reproductive trajectory to the next. Eleven women and five men were interviewed, mostly twice, and up to a maximum of four times at different stages in their journey through the reproductive trajectory. The analysis will be multi-staged, at first focusing on each individual narrative and biographical transition between the interviews, second, a comparative thematic analysis to identify themes of commonality and difference across the interviews and third an iterative analysis designed to go between emergent experiential themes from the study data and the wider body of work on HIV and pregnancy.

Results:
This paper will therefore introduce the study and the emergent themes from the preliminary analysis of the interviews with 4 women who received a diagnosis following routine antenatal screening will be presented. In particular, participants’ narratives reveal how the symbolic significance of HIV can have a profound influence on how they see themselves and their perceptions of how others, including health care professionals, see them.

Discussion:
A diagnosis of HIV during pregnancy constitutes a major threat to a woman’s personal and social identity. At a time when medical interventions to prevent onward transmission to the baby may be prioritized, nurses and midwives are in an ideal position to ensure that the woman receives appropriate social and psychological support to help her adjust to the challenges that HIV will inevitably mean for her self, partner and baby.

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Abstract O6

Growing older and living longer with HIV-1

L Hyrapetian1, L Heald2, N Perry2, M Fisher2 1Brighton and Sussex Medical School, UK 2Brighton and Sussex University Hospitals NHS Trust, UK

Background:
There are an increasing number of older persons in the UK living with Human Immunodeficiency Virus (HIV). This is due to people living longer with the introduction of highly active antiretroviral therapy (HAART) as well as people actually being diagnosed at an older age as a result of better case reporting, or an increase in incidence among this group. The interaction between HIV, HAART and the multitude of physiological and social changes associated with age poses potential problems and increased health care demands from this older cohort of patients. Due to this being a relatively new group of patients on the medical scene, there is lack of data and knowledge about their experiences, needs and concerns both medically and psychosocially.

Objectives:
This study aims to gain insight into individual experiences of living with HIV at an older age through a qualitative analysis.

Method:
One-to-one semi-structured interviews were carried out on 20 willing HIV-1 positive participants >/=50 years of age attending an HIV out-patient department. Purposive sampling was used when recruiting these individuals in order to reflect a range of patient situations that could affect experiences. All data were digitally recorded and transcribed verbatim. Data were analysed using a framework analysis approach.

Results:
Recurrent themes that emerged from the interviews specifically related to being older with HIV centred around; 1) Health, this included concerns about unknown effects of HIV and HAART with age, their relationship to co-morbidities, need for more psychosocial support, preference for the out-patient clinic over other services and continuity of care with the same doctor; 2) Survival, this included a feeling of living on borrowed time, outliving peers and memories of past stigma; 3) Self esteem and rejection, this included sexual dysfunction, change in physical appearance and role loss; 4) Coping, this included coping better with time and being diagnosed at an older age.

Conclusion:
Patients described both positive and negative aspects of being older with HIV. The implications of this study for health service provision suggest that older people with HIV are very satisfied with current services yet require more support of a psychosocial nature, smoother transitions and more liaison between HIV services and other specialities and more guidance on how and when to use particular services.

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Abstract O7

Palliative care in the Ukraine: results from the evaluation of a training programme for health care professionals.

D McDonald1, C O’Keeffe1, I Hodgson2 1Mildmay International, a subsidiary of Mildmay Mission Hospital, London, UK 2Health and Development Networks, Chiang Mai, Thailand

Background and Objectives:
HIV in Ukraine is one of the world’s most rapidly developing epidemics. HIV prevalence is 1.6% of adults between 15-49, and associated with increasing rates of injecting drug use, and in other vulnerable groups, such as sex workers, prisoners and MSM. ART access in the Ukraine is low, with increasing numbers requiring palliative care and rehabilitation.

In 2007 Mildmay undertook a needs assessment, leading to the design of a modular training programme for medical, nursing, psychological and social work professionals. The training was delivered in 2008 by experienced practitioners from Mildmay’s specialist AIDS rehabilitation and neuro-cognitive impairment unit in London. This paper presents findings of an evaluation of this training, aiming to identify the lessons learned from the programme, and its impact on HIV and AIDS services.

Methods:
Mixed methods were used, including questionnaires for participants, and face to face semi structured. In addition observations were made by the evaluation team at two of the AIDS Centres

Findings:
All participants state that the course had a positive impact on palliative care delivery in their clinical areas. Significant changes included: a better understanding that of palliative care, and that it is not just ‘terminal care’ but a comprehensive and holistic range of care and rehabilitation; interventions were now more informed with increased use of assessment tools for pain and cognitive impairment; increased awareness that HIV related cognitive impairment is a condition amenable to therapy and rehabilitation; and improved attitudes towards PLHIV with a greater appreciation of patient needs and the needs of their families. The evaluation also indicates that the training galvanised delivery of palliative care and rehabilitation services to include more non-medical services such as use of complementary therapies, physiotherapy and more use of counselling services.

Conclusion:
The evaluation documents the effectiveness of the training on improving palliative care and rehabilitation services. Recommendations include that Mildmay works in partnership with the Ministry of Health in Ukraine to increase access to this type of training in order to further improve access to and quality of HIV and AIDS services.

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Abstract O8

The uptake of sexually transmitted infection (STI) screening and incidence of STIs in the Barts and the London SPARTAC cohort

C De Souza, J Hand, P Davis, A Isaksen Grahame Hayton Unit, Ambrose King Centre, Royal London Hospital, UK

Objective:
The SPARTAC clinical trial is a multi-centre randomised trial of therapeutic Highly Active Antiretroviral Therapy (HAART) intervention at primary HIV-1 infection. BLT has 8 enrolled patients, all MSM (men who have sex with men). The objective of this study was to assess the uptake of STI screening offered, review the incidence of STI’s and evaluate the effects of nursing care in this cohort.

Methods:
Retrospective case note review of all sexual health screens done between March 2007 and March 2009. Data was entered into Excel and analysed. Findings were assessed and comparisons made with local, and national health protection agency (HPA) prevalence of STI’s.

Results:
Majority of patients (n=6; 75%) were offered 2 or more STI screens and took up 3 or more STI screens in the 2 year period. Half (50%; n=4) had at least one episode of non-specific urethritis (NSU) and Chlamydia, 3 (37.5%) had at least one episode of gonorrhoea (GC), 2 (25%) were diagnosed with syphilis and 1 patient (12.5%) was diagnosed with acute hepatitis C. In the general clinic from 01 Aug 08 to Feb 09, 188 men had an STI screen. Of these, 7% had Chlamydia, 4% GC and 9% NSU. HPA 2008 surveillance found a high proportion of MSM with an acute STI (32% gonorrhoea, 40% syphilis and 97% with hepatitis C) were also infected with HIV.

Conclusion:
There is a high uptake of STI screening and incidence of STI’s in this small cohort, indicating continued high risk sexual behaviour. Clinical trial patients have good continuity of care, building therapeutic relationships with research nurses. This facilitates health promotion enabling patients to talk about their own sexual health needs, thus reducing their risk factors and horizontal transmission. Focussing on the clinical trial aspects of care at HIV seroconversion may detract attention from appropriate sexual health support. Therefore there should be less focus on a clinical trial at the time of seroconversion and a holistic approach adopted. This would incorporate the Biomedical Investigation and Intervention Specialist National HIV Nurses Association competency which states research nurses should ‘plan and implement individual patient follow-up to ensure appropriate management’. Further work within this international trial is required to demonstrate if randomisation to a particular arm of HAART is linked to the incidence of STI’s.

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Abstract O9

Changes in body composition and physical functioning in response to an exercise referral programme for males living with HIV/AIDS

R Doerner, AS Page, M Hillsdon Dept Exercise, Nutrition & Health Sciences, University of Bristol, UK

Objective:
The aim of this study was to investigate whether taking part in an 8 or 16-week community-based exercise programme was related to changes in body composition and physical functioning in a sample of males living with HIV/AIDS.

Methods:
Participants were 717 males living with HIV/AIDS who had been referred from sexual health clinics to participate in a structured exercise programme based in Central London. Two hundred and one participants with previous experience of gym-based exercise completed an 8-week ‘fast track’ programme and 490 participants without gym experience completed a 16-week programme. Participants attended an exercise facility three times a week for a combination of supervised and autonomous exercise sessions. Measures included systolic and diastolic blood pressure (mmHg), resting heart rate (b/pm), bodyweight (kg), waist circumference (cm), trunk flexibility (cm) and aerobic power (predicted VO2max in mL×kg-1×min-1) assessed using the Astrand Cycle Ergometer test. Repeated measures analyses of covariance (adjusting for age, weight and symptom status) were carried out to investigate differences in each of these measures before and after the exercise programme. Multiple logistic regression analyses were conducted to determine what factors related to programme completion

Results:
Mean age of participants was 39.9 (SD = 8.06) years with 79% of the sample aged between 30 and 49. There was a significant (p<0.05) increase in predicted VO2max (41.93 vs 45.2) and flexibility (–3.16 vs 1.90) and a significant (p<0.05) reduction in resting heart rate (77.3 vs 76.5) and waist circumference (88.81 vs 87.34cm). Differences remained significant after adjusting for confounders. There was a significant effect for programme duration and cohort. Individuals taking part before 2004 and those of the fast-track programme showed significantly greater reductions in waist circumference compared to 16-week programme participants taking part post 2004. People with signs of lipodystropy, with self-reported ‘good/very good diet’, and lower activity levels at baseline were significantly (p<0.05) more likely to complete the programme. Individuals with mental health conditions were 57% less likely to complete compared to those without.

Conclusion:
These results suggest that completing a supported community-based exercise programme is associated with improvements in body composition and physical fitness for males living with HIV/AIDS. Further study is recommended to explore reasons for exercise non-adherence in people living with HIV/AIDS. Adapting existing exercise initiatives to the needs of currently under served and hard-to-reach groups may encourage programme uptake and improve adherence.

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Abstract 10

Education, education, education!

M Owen, S Harris, G El Badry Birmingham Heartlands HIV Service, Heart of England NHS Foundation Trust, Birmingham, UK

Objective:
To assess the educational requirements of Heart of England NHS Foundation Trust (HEFT) staff and preferred delivery of future training regarding the care and management of individuals infected with HIV.

Methods:
HEFT employs10, 000 staff across 4 sites.We considered a survey to be the most appropriate method to obtain required data. Following advice from colleagues in Audit, Clinical Governance and Research and Development, a 29 part questionnaire was developed and piloted on 50 staff. Minor changes were made and the questionnaire has so far been distributed to approximately 2000 staff, via internal post and by hand.We include return-addressed envelopes and alert staff to our commitment to recycle. Encouragement of active participation has been sought from colleagues and networks and our aim is for a final return from 1000 staff. Collection of data includes:

• Demographics;
• Experience of caring for someone with HIV;
• Attitudes;
• Existing knowledge;
• Desire for training/education;
• Preferred options for training/education;
• Awareness of existing HIV specialist team.

Data is being collated on a spreadsheet (Excel)

Results:
Word limitation prevents presentation of all results; therefore for the abstract, 7 of the 29 questions will be addressed. Of 503 respondents:

• 64% stated that they had cared for someone with HIV;
• 65% did not feel they knew enough about HIV;
• 96% knew HIV to be a virus;
• 22% had considered HIV as a differential diagnosis;
• 51% had not received education about HIV;
• 74% wish to receive further education;
• 51% were not aware of the Trusts HIV Specialist Service

Conclusion:
The data collected needs further analysis but we have identified that although many HEFT staff have contributed to the care of HIV positive patients, anxieties remain and the greater majority feel they need further education. The survey informs us that they would like this to be delivered in a variety of ways. In addition we need to highlight the existence of the HIV Specialist Service, raising awareness that we are a source of advice and support.

Medication side effects, pregnancy, co-morbidities and the ageing process increasingly necessitate shared care with other experts.

If HIV positive patients are to receive a service that is safe, of high quality and nonjudgemental, and if undiagnosed infection / onward transmission is to be reduced, the provision of HIV education to all staff needs to improve.

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Abstract 11

The lived experience of HIV and hepatitis C virus co-infection: a phenomenological study

G Farrell GUIDE Clinic, St. James’s Hospital, Dublin, Ireland

Introduction:
Co-infection with Human Immunodeficiency Virus (HIV) and Hepatitis C Virus (HCV) is common as both viruses share similiar routes of transmission. Hepatitis C related liver disease has emerged as a major cause of morbidity and mortality in the HIV positive population. Many studies have examined the clinical consequences of co-infection, yet there have been no studies detailing the patients experience of HIV/HCV co-infection.

Aims:
To provide an improved understanding of the patient experience of HIV/HCV co-infection, to identify common themes and patterns, to add to the body of knowledge and provide direction for the future management of this patient cohort.

Method:
This qualitative investigation uses Heideggerian hermeneutic interpretive phenomenology as a means of exploring the patient experience of living with HIV/HCV co-infection. A purposeful sample of 5 HIV/HCV co-infected patients has been interviewed regarding their experience of living with two lifelong chronic progressive viruses. This information has been then analysed to gain a better understanding and identify common themes and concepts.

Results:
The Study Participants described three periods in their lives: a colourful past, a complex present and an unexpected future.Within the text, 6 themes were identified: a defining moment, HIV versus HCV, loneliness/relationships, coping with stigma, care, and an awareness of mortality.

Conclusion:
This study assesses the patient experience of living with HIV/HCV co-infection. Individual and common themes central to living with two viruses were identified and explored. It is hoped that by gaining a better understanding of this phenomenon, healthcare workers can strive to improve the quality of care provided to this patient cohort.

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Abstract 12

Understanding the perspectives of patients on user involvement group (UIG): the implications for holistic nursing care and management of people with HIV/AIDS as a chronic condition.

MK Rogers Homerton University Hospital, London, UK

Background:
Historically, patient-client participation has played limited role in the assessment, planning and delivery of care in the NHS. Primary care groups were developed to provide opportunities to form partnerships between the NHS and local populations. Similarly, patients living with HIV/AIDS could greatly benefit from being involved in the assessment, planning and delivery of their care. BHIVA has recognised that user involvement groups (UIG) could support shared decisionmaking and improve individual care, and recommends that user involvement starts from the post-diagnosis assessment onwards However, barriers to the development and maintenance of UIGs exist amongst both users and healthcare providers.

Objectives:
To illustrate the perspectives of HIV patients on UIGs in an outpatient HIV clinic, specifically highlighting challenges associated with establishing a UIG.

Method:
A 90 minute focus group interview was conducted involving seven adults living with HIV who regularly use the Genotourinary Medicine (GUM) clinic as the main point of accessing HIV care. Thematic analyses of data were undertaken and the holistic perspective (denoting the six curricular strands consisting of caring, health, client/patient, professional nursing, environment and critical thinking) was used as theoretical framework for data collection and analyses.

Results:
Four major themes emerged from the analysis of the research data including: 1) Naming of the group; 2) Involving the multidisciplinary team; 3) Peer support; 4) Developing the group. The overarching theme was empowerment, wherein the participants wanted some authority or input in order to influence the way their HIV condition is managed.

Conclusion:
The general consensus amongst the focus group was that patients’ participation in their care and management is essential and increases motivation and satisfaction. However, the experience of partnerships involving users and healthcare staff was limited. Few examples of UIGs exist in HIV services, and the level of involvement with their own care seems dependent on individual staff members. Nurse-patient encounters in particular were sensitive to the social relations between the patient and the nurse. Paternalism and asymmetry are two attributes related to power and might also characterise the nurse-patient relationship. Nonetheless, since HIV/AIDS has emerged as a chronic condition, understanding the perspectives of patients on user involvement group has implications for providing holistic nursing care and management of people living with HIV/AIDS.

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