CARING FOR PEOPLE AFFECTED BY H I V
Inside this issue: Editorial Ian Hodgson ................................................................................................
Features Pegylated interferon and ribavirin combination therapy in HIV/hepatitis C co-infected patients Tom Fernandez, Annika Stenvall and Greeba Mulroony ..........................
Children living with HIV: psychological concerns Diane Melvin ...............................................................................................
The changing role of nurses within an HIV-outpatient clinic Jane Bruton .................................................................................................
Conference report European Association of Nurses in HIV/AIDS Care (EANAC)/ Royal College of Nursing (RCN) Sexual Health Conference Ian Hodgson ................................................................................................ 11
NHIVNA update Nicky Perry .................................................................................................. 12
Diary .......................................................................................................... 12
Published by Mediscript Ltd, 1 Mountview Court, 310 Friern Barnet Lane, London N20 0LD
HIV NURSING CARING FOR PEOPLE AFFECTED BY HIV Volume 3 Number 1 Spring 2003
National HIV Nursesâ€™ Association
Paul Brown HIV Clinical Nurse Specialist Barnet Primary Care NHS Trust London Jane Bruton HIV Nurse Manager Chelsea and Westminster Hospital, London Ian Hodgson Lecturer School of Health Studies University of Bradford Bradford Nicky Perry Research and Development Co-ordinator Royal Sussex County Hospital Brighton
Disclaimer Although great care has been taken in compiling and checking the information given in this publication to ensure that it is accurate, the authors, publisher, sponsor and its servants or agents shall not be responsible or in any way liable for the continued currency of the information or for any errors, omissions or inaccuracies in this publication whether arising from negligence or otherwise howsoever or for any consequences arising therefrom. The opinions expressed in this publication are, where named, those of the individual authors, and do not necessarily represent those of the publisher or sponsor.
Advisory Panel Roy Brazington HIV Mental Health Nurse Specialist Maudsley Hospital, London Margaret Clapson Paediatric Clinical Nurse Specialist Great Ormond Street Hospital, London Ian Jones HIV Dietitian Royal London Hospital, London Judith Sunderland HIV Specialist Midwife Newham General Hospital, London
Aims and Scope HIV Nursing is a new initiative which aims to develop a forum for those at the forefront of providing care for people affected by HIV. The journal is supported by a highly respected Editorial Board drawn from a wide range of nursing specialties. This is further strengthened by an Advisory Panel who will be making regular contributions to the journal. HIV Nursing is intended to provide a medium for communication on issues relating to HIV care, which will be run by the care professionals for those involved in the day to day matters affecting the lives of patients.
HIV Nursing is supported by an educational grant from the followng companies: Abbott Laboratories
Editorial Office Editorial Director: Fatima Patel Managing Editor: Heather Simmonds Mediscript Limited 1 Mountview Court 310 Friern Barnet Lane London N20 0LD UK
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Editorial Ian Hodgson elcome to the spring edition of HIV Nursing. Much has happened in the field of HIV and AIDS in the last few months, but I’d like to mention three items in particular.
First, the results of the Thai phase III HIV vaccine trial released in March were disappointing. Hopes are now pinned on the DNA–modified vaccinia Ankara (MVA) trial based in Oxford and Nairobi (a different type of vaccine, see Autumn 2002 edition of HIV Nursing for information about vaccines), though it will be a number of years before this is completed. Second, GlaxoSmithKline have agreed to provide cheaper antiretroviral medication to the developing world (the issues were discussed in the summer 2002 edition of HIV Nursing), and the debate on how to set up an appropriate infrastructure to distribute and monitor antiretrovirals is heating up.
interesting and informative articles addressing current issues in HIV care. I The feature article in this edition is on hepatitis C and HIV co-infection. Tom Fernandez, Annika Stenvall and Greeba Mulrooney update their previous contribution (see HIV Nursing, autumn 2002 issue), this time addressing issues arising during the initiation of treatment. They present a case study to illustrate their discussion. I We now know that HIV affects all social groups, ages and sexes in the UK. Di Melvin makes an important contribution to HIV Nursing in her article discussing psychological issues related to coping with HIV by families and children. Family units are now provided in many HIV centres, and the additional challenges posed to all carers (professional and lay) by the need to support HIV-positive parents and children, are considered in this article.
Third, a matter of great concern for the European continent is the huge increase in HIV infections in Eastern Europe. To give two examples, Russia is now thought to have 1.5 million HIV-infected people (most between the ages of 15–30 years). Estonia is also seriously affected: figures released in 2001 suggest that the number of new HIV infections is 15 times that of the UK. Many of the countries in Eastern Europe that are affected by HIV will join the European Union over the coming years and groups such as NHIVNA and the European Association of Nurses in HIV/AIDS Care (EANAC) will have a vital role to play in supporting the HIV carers in these countries, many of whom will be facing similar traumas to those faced by carers in the UK during the 1980s.
We hope that you enjoy reading this edition. The Editorial Board are always interested in articles written by readers for inclusion in HIV Nursing. You may want to disseminate developments in practice, or just to have a say! HIV Nursing remains the only European nursing publication written for and by people involved in HIV care, and your contributions will help keep the material dynamic and current.
We hope that HIV Nursing will play a role as well, and for this issue we provide what we hope will be
Feel free to send us ideas for articles you may have or just have a say.
I The changing face of HIV care brought about by the use of combination therapy has brought radical changes in the activities of outpatient departments. Jane Bruton’s article considers changes in the nurse’s role.
Pegylated interferon and ribavirin combination therapy in HIV/hepatitis C co-infected patients Tom Fernandez1, Annika Stenvall2 and Greeba Mulrooney3 Charge Nurse1, Junior Sister2 and Staff Nurse3, The Ian Charleson Centre, Royal Free Hampstead NHS Trust, London
Introduction his article follows our previous article on HIV/hepatitis C (HCV) co-infection, which explored the complex relationship between HIV and HCV . Having established co-infection services within our HIV clinic to help identify those most at risk of liver-related morbidity and mortality, we have been able to selectively initiate combination therapy for treatment of HCV. In this article we describe the issues faced when initiating therapy and providing treatment support and conclude by raising questions in the light of treatment outcomes. Some of these issues are illustrated in a case report on page 3.
Issues when initiating therapy Current therapy for treatment of HCV, following hepatic assessment, consists of pegylated interferon α-2b by injection weekly, in combination with daily ribavirin tablets. Duration of therapy is between 24 and 48 weeks depending on HCV genotype . Preparation before starting therapy is essential, as the best chances of successful treatment are associated with perseverance and adherence . Some patients, who have lived with chronic HCV for many years but have not yet been treated, have prepared themselves to take therapy. However, there has been an increase in the numbers of patients with acute HCV who could benefit from immediate treatment . Such early intervention, however, allows less time for patients to adjust to their diagnosis and to the concepts of early treatment. We have had to be careful to ensure that in promoting the benefits of early intervention we do not overwhelm the individual. We cannot assume that a previous history of taking highly active antiretroviral therapy (HAART) will mean that a patient is familiar with the practicalities of taking medicines and the principles of adherence. This only serves to emphasise the need for nurses to take an individual approach. We currently allocate to each patient about to start therapy a key nurse with experience in HIV and HCV management. Our aims are to clarify the principles of therapy and its intended outcomes and to engage the individual in the need for close monitoring and early reporting of any side effects. We undertake a thorough assessment of the
patient’s lifestyle, addressing the practical aspects of taking therapy, and its social impact and the wide range of potential side effects . As the treatment is intended to be finite (24–48 weeks), this process can help patients to create a ‘window of opportunity’ in their lives within which they can safely start and complete therapy. Written information is always provided for the patient’s future reference and for discussion with partners or friends who may be needed to support them through this often difficult period . Discussion of relationships with the patient is important for reasons other than just support and understanding. For female patients, and female partners of male patients (whether long term or casual), the need for effective contraception must be stressed because of ribavirin’s teratogenic and embryocidal potential. In gay male patients, who are the majority of our acute HCV seroconverters, there are different sexual issues to be discussed . The incidence of group sex and multiple sexual partners raises the question of whether re-infection, or infection with a different genotype, might jeopardise treatment success . Opportunities are made, wherever possible, to promote frank discussion of sexual practices with a view to improving the patient’s health, but some questions in this area remain unanswered. Having to inject interferon has raised concerns, as some patients are uncomfortable about its association with their past injecting drug use, while others are simply unsure about self-administration. Most choose to self-administer after a period of induction from the clinic staff, including injection technique, dose titration and safe disposal; the option to have the injections at the clinic or general practitioner’s surgery is offered. It is known that alcohol abuse exacerbates the progression of HCV-related liver disease . Any alcohol or recreational drug use can place a degree of additional burden on the liver. Discussing these factors can help patients to find a balance between substance reduction to improve outcomes and substance use to help them endure the treatment. Considering the impact that therapy can have on disclosure of disease status, relationships and lifestyle adaptations, as well as its complex side-
Feature effect profile, we routinely recommend referral to our counselling team at the outset, or any time thereafter during therapy.
Treatment support and side-effect management All patients have experienced some side effects but by no means the whole spectrum, which is reflected in the proportion of patients continuing on therapy for its planned duration. The commonest side effects appear to be flu-like symptoms of fever and myalgia (associated with interferon) for which regular dosing of prescribed antipyretic and antiinflammatory drugs can be helpful, particularly in conjunction with plenty of hydration . Cytopenias are common and in most patients we have noted a reduction in haemoglobin, neutro-
phils and platelets. In addition, there has been a significant reduction in absolute CD4 counts. However, anaemia has rarely required transfusion or ribavirin dose reduction. The use of erythropoietin to prevent anaemia, improve the quality of life and promote adherence, as used in the United States, has not been fully explored here . All these practices need careful monitoring for which we follow a strict protocol of frequent (initially weekly) blood sampling, which is an essential part of safely administering therapy. Low energy may be related to therapy-induced anaemia, but could equally relate to the spectrum of low mood, emotional drain and depression. Sustained lethargy may necessitate a change in work patterns, such as a reduction in workload, hours or even a period of sick certification. Any bar-
Case study: One man’s progress on pegylated interferon & ribavirin* José is a 44-year-old heterosexual Spanish man who has been diagnosed with HIV/HCV coinfection since summer 2000. He was infected through sharing needles, having injected heroin ‘on and off’ for up to 15 years, but hardly ever uses heroin now as he is on methadone. He remembers being diagnosed with ‘hepatitis’ in Spain around 15 years ago but this was never confirmed.
He reported few side effects apart from some sweats, lethargy and a degree of weight loss, none of which he was not expecting. However, he was severely troubled by the haematological effects of therapy and from the first week started experiencing problems with decreasing platelet, haemoglobin and neutrophil counts. Close monitoring was continued weekly but no dose modification was necessary.
On testing positive for HIV, he was also screened for HCV and found to be positive. His HIV appeared stable with a CD4 count of 258 cells/µl and viral load of 11,000 HIV-1 RNA copies/ml and there were no plans to initiate HAART imminently.
At certain times when neutrophil counts were <1.0 × 109 cells/l, granulocyte-colony stimulating factor (G-CSF) twice weekly by injection was introduced and effected an adequate response.
He was seen within the HIV/HCV co-infection clinic and a thorough hepatic assessment was undertaken. Liver ultrasound was normal, liver transaminases unremarkable and α-foeto-protein normal. However, a liver biopsy showed severe fibrosis. He was found to be genotype 4 with an HCV RNA level of 709,000 copies/ml.
At week 12, José demonstrated undetectable levels of HCV RNA, indicating a positive treatment response, a good indicator for continuing therapy and positively re-inforcing his treatment adherence. He felt well enough to travel to Spain to visit some friends, but was anxious about travelling with medication. When we provided a medical letter to allow him to travel with injectable items, he encountered no problems.
All this suggested that HCV therapy was indicated and for a duration of 48 weeks. José seemed well prepared to start therapy but expressed some concerns that self-injecting may cause problems with his occasional drug use. However, he declined the offer of having his weekly injections at the clinic and the advice of any drug services. Safer injecting and disposal issues were discussed with him. He had some housing problems, including worries about privacy and the safe storage of his injections, which needed to be kept refrigerated. These were not insurmountable and, in time, he was assisted with welfare advice and medical reports in support of a housing application.
José’s HIV viral load has remained fairly stable but he has experienced a steady and sustained decrease in his absolute CD4 count to levels <200 cells/µl. By week 20 it was necessary to commence daily septrin for Pneumocystis carinii (now known as P. jiroveci) pneumonia prophylaxis, which he has tolerated well. Jose has continued to week 40 of therapy. He is tolerating therapy well, remains HIV-stable and has a consistently undetectable HCV RNA load. We plan to continue therapy to 48 weeks then stop and monitor him for a sustained virological response.
* The patient’s consent was given and his name changed to ensure anonymity.
Feature riers posed by less than accommodating employers can be overcome with supportive medical reports and experienced welfare rights advice. The close therapeutic relationship we share with patients is pivotal in assessing mood change and suggesting appropriate interventions. While it may just involve listening to and understanding their frustrations, at other times it may mean counselling, psychiatric assessment or the initiation of antidepressant therapy. The importance of encouraging patients to enlist the support of others around them cannot be underestimated as they may experience fluctuating levels of irritability, energy and even libido. Patients have experienced hair loss (alopecia) and anorexia, which has exacerbated the expected degree of weight loss associated with therapy. Dry skin, while a common side effect, responds well to the use of emollients and, fortunately, injection site reactions are rare. However, all these features can alter the patient’s appearance, and negative body image, poor self-esteem and comments from friends or colleagues can pose a difficult challenge to their attitude to treatment. A change of hairstyle before starting therapy has suited some male patients, whereas weight loss has invariably resulted in referral to our dietician to consider dietary modification and, possibly, supplementation to improve weight. Positive reinforcement of adherence to therapy is an ongoing issue in the face of side effects and longer treatment durations. This can be supported by evidence of improved serological markers, such as improving liver enzymes and, ultimately, a reduction in the HCV-RNA load.
failed to reach an adequate virological response during treatment, in effect ‘failing’ therapy. The rest have cleared the virus with an end-of-treatment virological response. However, of these some have shown a virological rebound after having stopped therapy. Those who remain virologically suppressed are under our close supervision and we hope for continued suppression and the health benefits that it will bring.
Conclusions Our experiences of combination therapy for HCV co-infection have been both interesting and challenging. Side-effect management and treatment support, while requiring the use of many of our resources, seem to offer the best chances of helping someone through long and arduous treatment programmes. It is still early days for our patients and ourselves, and many questions remain about how effective treatment will be in both the short and the long term and when we will see a reduction in liver-related ill health in our patients.
Fernandez T and Stenvall A. HIV-hepatitis C co-infection. HIV Nurs, 2002, 2, 5–7.
Manns M, Hutchinson J, Gordon S et al. for The Hepatitis Interventional Therapy Group (2001). Peginterferon alfa-2b plus ribavirin compared with interferon alfa-2b plus ribavirin for initial treatment of chronic hepatitis C: A randomised trial. Lancet, 2001, 358, 958–965.
Hutchison J, Manns M, Patel K et al for The International Hepatitis Interventional Therapy Group. Adherence to combination therapy enhances sustained response in genotype-1-infected patients with chronic hepatitis C. Gastroenterology, 2002, 123, 1061–1069.
Jaeckel E, Cornberg M, Wedemeyer H et al. for The German Acute Hepatitis C Therapy Group. Treatment of acute hepatitis C with interferon alfa-2b. N Engl J Med, 2001, 345, 1452–1457.
Birkel A, Caldwell L, Stafford-Fox V et al. Combination interferon alfa-2b/ribavirin therapy for the treatment of hepatitis C: nursing implications. Gastroenterol Nurs, 2000, 23, 55–62.
National AIDS Manual. HIV and Hepatitis, NAM, London, 2002.
Bernard E. Sexual transmission of hepatitis C. AIDS Treat Update, September 2002, 117, 2–5.
Jarvis L, Watson H, McOmish F et al. Frequent re-infection and reactivation of hepatitis C virus genotypes in multitransfused haemophiliacs. J Infect Dis, 1994, 170, 1018–1022.
Poles M and Dieterich D. Hepatitis C/HIV co-infection: Clinical management issues. Clin Infect Dis, 2000, 31, 154–161.
Treatment outcomes For most patients the goal of treatment is to clear the hepatitis C virus in conjunction with normalising liver function and reducing the degree of fibrosis. HCV RNA should be undetectable at the end of therapy and remain suppressed at 6 months thereafter, this constitutes a sustained virological response . In our experience, while some patients do not complete therapy due to issues of tolerability, most are able to continue, with the help of committed treatment support, close monitoring and good side effect management. Response rates in co-infected patients will never be as high as those in their HCV-mono-infected counterparts, though not long ago our first group of patients completed therapy . A few patients
10. Dieterich D. Treatment of hepatitis C and anaemia in HIVinfected patients. J Infect Dis, 2002, 185 (suppl 2):s128–s137. 11. Nelson M and Mathews G on behalf of BHIVA. Draft hepatitis C co-infection guidelines. (http://www.bhiva.org/ guidelines, accessed on 2 June 2003.)
Children living with HIV: psychological concerns Diane Melvin Consultant Clinical Psychologist, Family HIV Service, CNWL Mental Health Trust, St Mary’s Hospital, London
dvances in the management of HIV have led to considerable changes for everyone living with the virus and for the kinds of services providing care in the UK. The psychological needs of children who are HIV-infected reflect these changes. At the beginning of the 1990s, there were many young children often ill and with sick parents. Losses and death were common. There was isolation and secrecy, and often overt fear from the surrounding community; many families had to cope with a number of practical and social needs too.
With increasing knowledge about HIV together with advances in available and effective treatments, there has been a general improvement in health, a reduction in mortality and a reduction in mother-tochild HIV transmission . The disease has now become a chronic condition rather than an acute illness. Sadly, improvements in the management of HIV have not been matched by sustained and relevant health prevention messages to the wider community, nor by a substantial reduction in the anxiety and stigma the diagnosis creates. This article reviews the present psychological needs of children who are HIV-infected. It places them in a developmental and systemic framework and addresses the importance of looking at evidence and good practice from other chronic paediatric illnesses as well as considering the particular circumstances of HIV.
Background Most children in the UK aged under 16 years who are known to be HIV-positive will have acquired the infection via mother-to-child transmission and will have lived with HIV all of their lives . A reduction in the number of deaths and fewer infected babies being born have meant an increase in the numbers of older children in this population (e.g. over 25% of the children attending our family clinic are 11 years or older). However, as well as increased numbers of older children, there is a steady number of newly diagnosed young children, many of whom are very HIV-compromised. Most are from families where the mother has been unaware of her HIV status during pregnancy or have come from countries where HIV testing and medication are not readily available. Psychological concerns now centre more on coping with a chronic condition and the demands of treatment, rather than the earlier emphasis on support
and counselling on testing and adjustment to illness and loss.
Social influences Practical and social factors are known to affect the ability to cope with chronic illness in the family [3,4]. The impact of HIV together with the secrecy and stigma associated with its diagnosis, increases stresses in the family and is likely to make these children’s emotional health more vulnerable. Providing consistent parenting in the presence of varying health and without wider personal support is often difficult, and is likely to influence child care and developmental opportunities, whether the children are infected or not. Families living with HIV rarely receive open support or compassion from the wider community, unlike others living with chronic or life-threatening conditions. The following are common factors in these families that are likely to affect psychological adjustment and functioning: I Changes and losses in family structure or primary carers. While most HIV- positive children live with one or both of their biological parents, there are a significant number who have had to adjust to living with other family members or in foster or adoptive care. I There are a relatively high proportion of single, unsupported households in this population, as well as considerable parental conflict and relationship breakdown [5,6]. I Practical difficulties associated with poverty, asylum or residency issues. I Country and cultural changes. While most of the children were born or grew up in the UK, many of their parents grew up in other countries and were separated from wider family and personal support networks, as well as some loss of cultural identity. A few will also have experienced trauma from conflicts or severe deprivation. I Adjustment to a new community with differing health and spiritual beliefs, and different expectations and roles for children, requires time and emotional effort. Since children adapt differently from adults this may add to family conflicts .
Children’s understanding Society increasingly values children’s participation in events that directly affect them. There is increasing emphasis on children knowing more
Feature about their HIV diagnosis, especially now that many are older and need to take a more active role in decisions and adhering to treatments. Children are more resilient than adults often predict, and can cope with difficult situations but only if support is available from those who care for them. Uncertainty and confusion are known to increase psychological upset and interfere with coping and adjustment. In dealing with illness, loss and death, there is some evidence from other situations that children’s anxiety is reduced when they have a full understanding of what is happening [4,8]. Parents and support services are understandably cautious about instituting an open discussion with the child about the diagnosis because of the stigma and negative reactions surrounding the term ‘HIV’. Parents often worry about who else the child might tell. Sharing the child’s diagnosis will also provide information about the mother’s diagnosis and this can create extra feelings of blame and shame. Balancing the benefits for the child of knowing with keeping the information personal and safe requires careful discussion. The following can be of help: I The most effective approaches are those that start a dialogue about hospitals, health and illness at a young age, and experiences and knowledge lead to gradual learning. I A full and open sharing of the diagnosis should happen when the child is ready and parents are confident it will help the child. Information needs to be reviewed and updated over time. I Support for parents to take the lead in this process gives important messages of trust to the child. I Partial, but truthful, explanations, can be psychologically protective if full explanations are not possible . I The aim is for most youngsters to have had an open discussion about their diagnosis by early adolescence. Exceptions may include those with
a learning or mental health difficulty, excessive isolation or lack of parental support. I There is often little to be gained in sharing the child’s diagnosis with the wider system, including schools, and there is no legal obligation to do this. Older children often do not want everyday friends to know they are HIV-positive and may separate their HIV friends and support from their ‘ordinary’ lives . I There are different concerns around sharing parental or sibling diagnoses with other children in the family.
Development and function Physical health and emotional well-being are interconnected and both can be affected by developmental as well as social difficulties . Unlike in adults, who acquire HIV when their systems are mature, in vertically infected babies and young children, the virus affects the developing central nervous system. This means that they have an increased risk of neurological and functional consequences, not only from the direct effects of HIV on the brain and the central nervous system, but also from indirect effects (e.g. illness and infections, poor nutrition, etc.) . Neurological and developmental difficulties are more frequently found in children with early rapid HIV progression. Antiretroviral medication may reduce the severity of the effect of a developmental problem and stop further deterioration, but cannot reverse neurological damage if it has already occurred. Table 1 shows some common kinds of developmental weaknesses found at different ages [12,13]. These findings suggest that younger HIV-positive children starting school are likely to require higher levels of learning and behavioural support than those who are now of secondary school age. This is because more of the younger children fall into
Table 1: Common kinds of developmental weaknesses in children at different ages. Development stage
Mainly acute/rapid progressors
Significant proportion with neurological signs and/or severe developmental delay*; mobility and expressive language difficulties common.
For example, early nursery place, home teaching services, opportunity group, local physiotherapy, and speech and language therapy or child development services.
Mixture of acute/ slow Mainly in mainstream school with low Special educational needs provision at progressors average/borderline cognitive skills but school; activity groups. increasing number needing extra help with learning†; attainments often poorer than ability; attention and concentration difficulties.
Mainly slow progressors; some still not on medication
Generally doing satisfactorily but increase in emotional problems. Emerging concerns over body image (lipodystrophy?), and delayed puberty.
Access to HIV peer group but also ordinary adolescent activities
*Approximately 30% in St Mary’s Hospital population; †approximately 40% in St Mary’s Hospital population.
Feature the very compromised group with serious HIV symptoms; many have signs of neurological damage and severe developmental delays. Evidence from other conditions where there are developmental impairments emphasises the importance of early intervention to help reduce the impact of an underlying problem and to prevent secondary emotional and social handicaps, including poor self esteem . In HIV, a referral to appropriate local child development or special needs services may be complicated, because of concerns about the wider sharing of the diagnosis. There has been little systematic monitoring of levels of emotional or behavioural difficulties in HIVpositive children in the UK. Severe disturbances are rare, and few of these children are known to psychiatric or mental health services. Early access to specialist psychology and counselling services, which is a feature of many HIV services, may have acted in a preventative way. As these children get older there are signs of more emotional difficulties emerging. US and French studies have reported difficulties with adjustment, conduct and disaffection in adolescents with HIV . A recent study in which London children and families were asked to identify needs revealed worrying concerns about bullying and feelings of difference and discrimination at school .
I HIV effects on puberty and sexual development; I planning for the future with so much uncertainty.
Summary Addressing quality of life as well as managing illness remains a priority in the care of children with HIV. While a pro-active approach with early intervention remains the most effective way of delivering psychological care, the needs of the population have changed. There is still much to be learned about psychological management from other chronic paediatric conditions.
Tudor-Williams G. Use of antiretrovirals in children. J HIV Ther, 1999, 4, 68–73.
Lyall EGH. Review of current research on breastmilk and mother to child transmission of HIV. Reprod Health Matters, 1998, 6, 127–130.
Wallander JW and Varni JL. Paediatric chronic disabilities: haemophilia and spina bifida as examples. In: Handbook of Paediatric Psychology (Routh D, ed.), Chapter 6, Guilford Press, New York, 1998.
Eiser C. Growing Up With a Chronic Disease: The Impact on Children and Their Families. Jessica Kingsley, London, 1993.
Melvin D and Sherr L. HIV infection in London children: psychosocial complexity and emotional burden. Child Care Health Dev, 1995, 21, 405–412.
White J, Melvin D, Moore C et al. Parental HIV discordancy and its impact on the family. AIDS Care, 1997, 9, 609–615.
Chinoya-Mudari M and O’Brien M. African refugee children and HIV/AIDS in London. In: Families and Communities Responding to AIDS (Aggleton P and Hart S, eds), Falmer, London, 1999.
Rushforth H. Communicating with hospitalised children: review and application of research pertaining to children’s understanding of health and illness. J Child Psychol Psychiatry, 1999, 40, 683–692.
Funck-Bretano L, Costagliola D, Seibel N et al. Patterns of disclosure and perceptions of the human immunodeficiency virus in elementary school-aged children. Arch Ped Adolesc Med, 1997, 151, 978–985
Psychological care in adolescence Family-based care and clinics show continuing success in the management of children and parents with HIV . However, these services are now on a steep learning curve to meet increasing numbers of young adolescents with vertically acquired HIV, and are having to consider transitional care . Adolescence is a time of change, physically, emotionally and sexually. It is often characterised by an increase in risk-taking and challenging behaviours, emotional volatility and the emergence of peer relationships as of equal or more importance than family ties. The main psychological tasks during teenage years are concerned with establishing autonomy, independence and identity. If an adolescent is coping with illness, these goals can become more stressful or difficult to achieve, with parents being more protective and control exerted over treatment adherence . Further issues for HIV-infected adolescents include: I negotiating personal and intimate relationships, e.g. when to share the diagnosis with friends ; I managing the physical and functional effects of chronic illness and long-term medication, e.g. the effects of lipodystrophy on body shape and self esteem;
10. European Forum on HIV/AIDS. Will someone listen? Please! European Forum on HIV/AIDS Children and Families Newsletter, 11, 1–12. 11. Missmer SA, Spiegelman D et al. Predictors if change in the Functional status of children with human immunodeficiency virus infection. Pediatrics, 2000, 106, 24–31. 12. Lyall EGH, Foster C, Melvin D and Biggs R. Neurological and developmental outcomes in HIV-infected children presenting before 3 years of age. Ninth Annual Conference of the British HIV Association (BHIVA), Manchester, 2003, Abstr. O5. 13. Melvin D. Paediatric HIV: psychological issues: challenges and achievements. J HIV Ther, 1999, 4, 77–81. 14. Brown LK, Lourie KJ and Pao M. Children and adolescents living with HIV and AIDS: a review. J Child Psychol Psychiatry, 2000, 41, 81–96. 15. Lewis E. Afraid to Say: The Needs and Views of Young People Living With HIV/AIDS. Strutton Housing/NCB Enterprises, London, 2001. 16. Gibb D, Masters J and Shingadia D. A family clinic: optimizing care for HIV infected children and their families. Arch Dis Child, 1997, 77, 478–484.
I adherence to a complex drug regimen ;
17. Viner R. Transition from paediatric to adult health care: bridging gaps or passing the buck? Arch Dis Child, 1999, 81, 271– 275.
I family conflict with differing cultural expectations;
18. Head S. Children and adherence. HIV Nurs, 2001, 1, 6–7.
I the emotional burden of secrecy;
The changing role of nurses within an HIV-outpatient clinic Jane Bruton Clinical nurse lead for HIV and Sexual Health, Chelsea and Westminster Hospital, London
Nursing in HIV: old structures, new problems ike many nurses in HIV, staff at the Kobler Clinic face a dilemma in that the care structures and services no longer fully reflect the needs of HIV patients in the era of highly active antiretroviral therapy (HAART). The decrease in mortality, the rise in HIV infection in other high-risk groups and the transformation of HIV from a terminal disease into a chronic illness has had a dramatic effect. Within the HIV Directorate at Chelsea and Westminster Hospital, our three outpatient clinics have 4000 patients registered, 3400 of whom are seen in the Kobler Clinic. This is a far cry from the situation before HAART became available: the Kobler Clinic has experienced a year-on-year increase in patient numbers of 10% over the last 10 years. The number of new HIVpositive diagnoses in the Directorate is still rising (currently eight per week). This trend is confirmed by recent predictions that the number of new diagnoses in London will rise by 40% between the end of 1999 and the end of 2003, from 13,000 to 18,000  There has been a shift from inpatient to outpatient care; as a result, during 1997–1998, all the major units halved their inpatient beds. Money has been moved from HIV services, both in the primary and hospital sectors, to support the burgeoning drugs budget.
Before and after When AIDS first became a problem, there was a genuine feeling among some nurses that this was an opportunity to demonstrate how holistic nursing could really work: Richard Wells summed it up: ‘If we get it right for AIDS, we’ll get it right for the whole of nursing’ . With such a new disease, there was little hierarchy of knowledge and expertise. This led to a relative equalisation of roles and relationships between doctor, nurse and patient, away from the traditional biomedical model . This multidisciplinary-led care was a recognition of the fact that the patients’ medical problems were only one part of the whole picture in lives affected by prejudice, discrimination, multiple bereavement and fear. Patients expected outpatient appointments with consultants and senior medical staff because of the complexity of HIV and AIDS. With virtually open access, hospital units took on the role of a quasi-general
practitioner to the patient. With the emphasis on care in the absence of a cure, this was a chance for the nurse’s role to be fully potentiated. Nurses were thus able to develop new ways of caring, both in the inpatient and outpatient setting, with the introduction of key nursing and primary nursing . HIV activists campaigned for their rights; for example, for Advanced Directives ensuring the right to control end-of-life decisions, which eventually achieved recognition by the British Medical Association . The impact of HAART has crept up on healthcare providers and it is only now, 7 years later, that the disjuncture between service and needs is being addressed. The dominance and complexity of the drugs, the plethora of clinical and pharmaceutical research, the continual development of new drugs and the increasing diversity and number of patients has led to a greater hierarchy of knowledge and time. The ‘magic bullet’ theory, which is at the heart of the biomedical model, has taken centre stage . This fuels a tendency to place less emphasis on ‘care’ and push more towards ‘cure’. As the wait for appointment slots gets longer, the pressure is on to either shorten the consultation and see more patients or see the patients less often. Nurses within the Kobler Clinic have traditionally provided holistic individualised care by coordinating the overall management of the patients and acting as their advocate and support. This role incorporated delivery of some specialist services, such as molluscum clinics, a family clinic, chemotherapy administration, endoscopy and hepatitis, and each nurse carried a specific caseload of patients who had been identified as having increased nursing needs. Gradually, with the increase in numbers and the complexity of the patients’ needs, nurses began to see their role of assessment, patient management and advocacy being squeezed by an urgent set of tasks. The Directorate identified adherence as a specialist nurse role, further splitting away a function that would have been seen originally as a part of the holistic package. One nurse summed up the problems in a team meeting: he bemoaned the fact that when he takes patients’ blood, he is reluctant to ask how they are as he hasn’t the time to deal with the reply,
Feature knowing there is a queue of patients waiting who want to be out of the clinic as quickly as possible. The outpatient department is now only a small part of patients’ lives: they have jobs to go to or places to be . The contradiction the nurses felt was that the patients’ needs, though different from those in the pre-HAART era, were equally, if not more, complex and were largely hidden. The Sigma research project of 1999 confirmed this: ‘These results clearly support the findings of our earlier qualitative study: personal and social change involves much more than clinical success … the more usual story is less remarkable and more differentiated by the ongoing demands of daily life. This does not diminish the importance of combination therapies, but recognises that living with HIV entails much more than the medical management of a viral infection’ . It was clear from discussions with other HIV centres that the problems with the nursing role were not peculiar to the Kobler Clinic.
What did Kobler nurses do? The nursing team decided to review the current situation by first reflecting on the Burford Model of Nursing and those components of the statement outlined by Johns . This enabled us to look critically at our own philosophy of care. The intention was to come to an agreement about what we saw as the future of nursing in the unit. We then explored the following five areas by brainstorming in the group and through literature reviews: I What the nurse’s role is now and what it ought to become I What patients’ needs are currently and how they have changed I How we currently deliver nursing care I What other factors influence decision-making I How we would monitor or measure any change that may be implemented From these considerations, it became clear that the nurse’s role had to change to reflect the changed needs of the patients, the outside pressures to change and the need to make effective use of the nursing expertise. We decided to adopt an approach based on the principles of action research; this is a cyclical dynamic research method with no defined endpoint, by which we aim to plan and implement our ideas for change, observe the results and make further changes in the context of this review. We defined action research at this stage as: collaboration between researcher and practitioner, the solution to practical problems, a change in practice and the development of theory . We explored different types of action research and decided to have a member of the team act as an internal facilitator. We agreed to propose a collaborative project with the Richard Wells Centre at Thames Valley University (TVU), using an action research approach facilitated by our F-grade Senior Staff Nurse.
At the same time, the medical staff were beginning to examine their practice and service delivery, particularly in the context of clinical governance, which demands quality, standardised, evidencebased medicine. This led to the introduction of resistance profiling for all patients within a ‘virtual clinic’, where all patients undergo an HIV drug resistance test and the results are reviewed by a skilled multidisciplinary team. The aim is to ensure consistency of medical prescribing and consideration of the personal and social aspects of a patient’s profile. Some physicians also questioned the viability of primarily consultant-led consultations and viewed a medical firm/team-based approach as more appropriate. Both initiatives have nurse-led working as part of the underlying philosophy. It was decided, after advice from the Richard Wells Centre for Research, to collaborate with the doctors and initially link the nurses’ action research project to the already established pilot clinic, in which we could test an expansion of the nurse’s role. The Action Research Steering Group, with two consultants and four nurses, agreed on two main areas on which to base the first changes in role: hepatitis vaccination and the piloting of a medical team approach.
Audit of hepatitis A and B vaccination An audit of hepatitis A and B vaccination demonstrated poor uptake of the vaccine, which appeared to be due mainly to pressure of time within the doctor consultation. The nurses were to be developed to deliver a comprehensive hepatitis A and B vaccination and health promotion service using a Patient Group Direction (PGD). This emphasised one change that was identified as central by the nurses’ team: to take a pro-active approach in their relationship with the patients and doctors rather than the more common reactive approach of responding to a doctor’s request for assistance with a patient. As part of this approach, it was acknowledged that while a collaborative relationship with the receptionists was vital, nurses were often taking on clerical duties that prevented them from nursing.
Pilot team-based consultation The second initiative was the piloting of a teambased approach to consultation. Thursday morning clinics run as a firm, comprising the doctors, a research nurse and a service nurse. There is a preclinic meeting to discuss the patients booked in and agree on the most appropriate person to see that patient. The patients are informed of the pilot scheme and are given the option of seeing the doctor they had expected to see. We had agreed on criteria for nurse referrals: new patients, adherence issues, vaccination, patients on medication or off medication who had been stable for 1 year and
Feature any other patients thought appropriate. The nurses involved in the pilot scheme were on F grade or above and identified their training needs for involvement in the pilot scheme. It was acknowledged that competencies would need to be written. The nurses working within the pilot scheme would keep a reflective diary and there would be a qualitative and quantitative audit of the pilot. Some doctors have already expressed a desire to roll this pilot out to another morning; interestingly, some of these were the most resistant to the original idea. The nursing team held one away day, facilitated by Chris Johns, to examine in depth the use of reflection in practice as part of the development of the research.
What are the obstacles to a new role for nurses? Anecdotally, patients who have been seen by the nurse have expressed satisfaction, but we are aware that patients have traditionally moved treatment centres to stay with ‘their doctor’. There may be a reluctance among doctors to share patients and there is a potential difficulty with this approach in maintaining continuity of care. In the long term, the role changes have implications for the number of nurses on the establishment, the skill mix and gradings, all of which are dictated by financial constraints. We have released some money by developing two B grades out of two D-grade posts in order to develop more advanced practice roles within the team. This will also allow a shift of non-nursing duties to healthcare assistants and release skilled nursing time. The current skill mix, however, does not resemble the mix we may need in the future. The increasing workload makes it difficult for staff to be released to work on aspects of the project. Changing culture, even with all in agreement, remains one of the biggest challenges for all parties.
Conclusions The Kobler Clinic nurses have already recognised that their role is gradually changing and feel that they have made a modest start on a long road. The culture within the clinic is strongly medical and the nurses are aware that if they do not, themselves, define their role, as has happened throughout nursing, someone else will. The Government, in the Wanless report commissioned by the Chancellor of the Exchequer, recognises that the demographic trends in medicine and nursing, combined with the need to increase National Health Service (NHS) productivity, means that nurses will increasingly
take on roles previously seen as the medical domain and unskilled staff will take on former nursing roles . The aim of the Kobler project is not for nurses to become mini-doctors but to ensure that the patients’ holistic needs are met by the most appropriately skilled person. The bottom line is that this requires a change in nursing structures and services. The action research process uses a spiral of action research cycles, consisting of four phases: planning, acting, observing and reflecting . Its strength for our team is that we have a ‘collaboration through participation, acquisition of knowledge, empowerment of participants and social change’ . In other words, this research is conducted and owned by the team and, hopefully, will change the way we work for the benefit of the nurses, doctors and patients in the unit, and perhaps for other centres too.
The London HIV Strategy Group. Modernising HIV Services in London: A Strategy for HIV Prevention, Treatment and Support in London 2002/2005. Draft for public consultation, 19 November to 18 February 2002, NHS, London.
Hodgson I. Report of the Second NHIVNA Conference, Manchester, 2001. (http://www.bradford.ac.uk/staff/ijhodgson/summaries/ accessed on 2 June 2003.)
Mercey D. An AIDS consultant’s approach to HIV and AIDS. In: Positively Women Living With AIDS (O’Sullivan S and Thomson K, eds), Sheba Feminist Press, London, 1992, pp153–164.
Hicken I and Faugier J. Establishing a nursing agenda. In: AIDS and HIV: The Nursing Response (Faugier J and Hicken I, eds), Chapman and Hall, London, 1996.
British Medical Association. Advanced Statements About Medical Treatment, BMJ Publications, London, 1995.
Brant AM and Gardner M. The golden age of medicine? In: Medicine in the 20th Century (Cooter R and Pickstone J, eds), Routledge, London, 2002, pp22–26.
Morris A. The working man and his clinic. Positive Nation, 2003, 91, 50.
Anderson W and Weatherburn P. Taking Heart? The Impact of Combination Therapy on the Lives of People with HIV, Sigma Research, London, 1999.
Johns C. Becoming a Reflective Practitioner, Blackwell Science, Oxford, 2000.
10. Holter IM and Schwartz-Barcott D. Action research: What is it? How has it been used and how can it be used in nursing? J Adv Nurs, 1993, 128, 298–304. 11. Wanless D. Securing Our Future health: Taking a Long Term View, HM Treasury, London, 2001. 12. Zuber-Skerit O. Improving Learning and Teaching Through Action Learning and Action Research. Draft paper for the Higher Education Research and Development Society of Australasia (HERDSA) Conference, University of Queensland, 1992. 13. Masters J. The History of Action Research, 1995 (http://www. beh.cchs.usyd.edu.au/~arow/Reader/masters.htm (accessed on 30/09/98).
Some Conference sort of heading report
European Association of Nurses in HIV/AIDS Care (EANAC)/Royal College of Nursing (RCN) Sexual Health Conference Ian Hodgson School of Health Studies, University of Bradford, Bradford
Manchester, UK 25–27 October 2002 eld in the sunny (well, windswept, rainswept and occasionally sunny) environs of central Manchester (UK), the combined EANAC/RCN Sexual Health Conference came to town in October 2002. It was a special pleasure to see Tom Snee at the conference. Since he was a founder member of EANAC in the early 1990s, it was especially pleasing that he could attend this event, at which the future shape of EANAC began to take form.
The theme of this conference, Facing the future: sexual health and HIV nursing in Europe, summarised the main thrust of this event, and the plenary and concurrent presentations certainly provided a valuable opportunity for the 140 or so delegates to update themselves on current HIV and sexual health issues in the UK, Europe and beyond. Dr Srdan Matic, WHO Regional Adviser for sexually transmitted infection (STI)/HIV, opened the conference, and presented some horrifying statistics on the rapid increase in the numbers of HIV and STIs in Eastern Europe (now faster growth than in Africa and Asia). This is ‘on our doorstep,’ he said, not far away on another continent. The plenary speakers gave delegates an especially broad and expert overview of current issues. Other plenary speakers included Professor Peter Aggleton, who considered the implications of increasing numbers of people infected with HIV and other sexually transmitted diseases. Anita Weston, Nurse Consultant in GenitoUrinary Medicine at St Thomas’s Hospital in London gave an interesting insight into her role,which although relatively new in the UK, has the potential to be increasingly influential in developing appropriate models of care. The high quality of research-based concurrent presentations, covering such diverse issues as HIV and pregnancy in Denmark, the provision of contraceptive services in a youth café in England and adherence to HAART in Belgium, all served to remind us that the knowledge base around sexuality and HIV is constantly changing and expanding. Presentations that were especially intriguing were those considering social issues and HIV/sexual health. For example, the strong link
shown between socio-economic status and HIV in a study from the northwest of England. The management of the victims of sexual assault in a genitourinary medicine clinic in Northern Ireland was also addressed, and the benefits of an appropriate approach considered. One presentation from outside Europe described factors, identified in one study, that influence women’s ability to adopt protective behaviours in South Africa, centring on the power imbalance against women in the region. Other speakers discussed the unique ability of HIV carers to engage with their clients (in contrast to the general population), as shown in a UK study, and the need for rigid protocols to reduce the chances of exposure to blood-borne pathogens in the Netherlands. There were many other interesting presentations but a lack of space precludes their inclusion here. On the final day, the conference closed with two plenary presentations that brought home the international issues facing carers, health educators and health promoters. Dr Pramilla Senanayake of the International Planned Parenthood Federation (IPPF) highlighted the increasing mobility of populations across the world, and the continuation of cultural practices that restrict the freedom of women (e.g. child marriages or preference given to sons). There is a great need to address issues of sexual discrimination in many countries in relation to sexual health, and it is ironic that as the need for interventions increases, the IPPF has recently had its budget cut in the US because of a desire by President George Bush and his administration to promote ‘family’ values. Dr Tesfamichael Ghebrehiwet, of the International Council of Nurses (ICN), closed the conference on a salutary but essential note. HIV and AIDS continue to rampage across large parts of the developing world. There is no cure; a vaccine is many years away. Stigma and discrimination are still as strong as they ever were, based on fear, and a wish to exclude those who don’t ‘fit’ with pre-existing stereotypes. Nursing needs to challenge taboos about sex and sexuality with ‘enlightened leadership’, so that nurses will be at the forefront in providing care and access to treatment for all people. This challenge rang in our ears as we left the conference.
Some sort Update and of heading Diary
NHIVNA update The plans for the 5th Annual Conference are proceeding well. The conference on 26 and 27 June, in Brighton, will be focusing on HIV: past, present and future. We hope that this conference will enable delegates to gain an overview of where, as nurses, we have come from, where we are now and what are the issues that will be facing us as practitioners and our patients in the future. The programme is varied, and this year we have a symposium on Fuzeon (T20 or enfuvirtide) and the implications of this new treatment for us as nurses and for our patients. For further information on this year’s conference, contact firstname.lastname@example.org We have many awards to give away at this year’s conference, the NHIVNA/Bristol Myers Squibb Travel Award, NHIVNA/Boehringer Ingelheim Award as well as the Krattinger Rennison Award for research. Both oral and poster presentations are eligible, so if you’ve submitted an abstract, good luck! All delegates attending the conference will also be entitled to a free copy of the latest edition of Professor Robert Pratt’s book HIV Nursing Care. The book is due to be published in July and your copy will be forwarded to you. We thank all the sponsors and the Krattiger Rennison Trust for their support.
The NHIVNA/Boehringer Ingelheim scholarship forms part of a bigger programme of awards that include travel scholarships and research grants supported by Boehringer Ingelheim and managed by NHIVNA. We have £10,000 to give away each year. The awards will be launched at the conference and further information will be sent to you.
HIV Nursing is undergoing some changes over the next few months and we are fortunate to have secured further funding from the pharmaceutical industry. I am excited that NHIVNA will have a greater profile in the journal and I look forward to working with Jane and Ian on the Editorial Board. We are all very grateful to Zoë Sheppard and GlaxoSmithKline for helping us get the journal up and running, and it is due to their initial support that we are now in a position to attract further sponsorship. I will be writing to those of you who have previously been recipients of Krattinger Rennison awards at one of our annual conferences, inviting you to write up your research for the journal, or you can contact me on email@example.com I look forward to seeing you in Brighton in June. Nicky Perry, Chair, NHIVNA, Brighton
26–27 June 2003 5TH NATIONAL CONFERENCE OF THE NATIONAL HIV NURSES ASSOCIATION (NHIVNA), BRIGHTON, UK Contact: NHIVNA Secretariat, 1 Mountview Court, 310 Friern Barnet Lane, London N20 0LD Tel: 020 8446 8898 Fax: 020 8446 9194 Email: firstname.lastname@example.org
7–8 November 2003 13TH CONFERENCE OF THE EUROPEAN ASSOCIATION OF NURSES IN HIV/AIDS CARE HIV NURSING: A PAN-EUROPEAN PROBLEM, STOCKHOLM, SWEDEN Contact: Alison Sutton, Secretary of EANAC Tel: 01905 796 516 Email: email@example.com Website: http://www.eanac.org
10–11 October 2003 BRITISH HIV ASSOCIATION (BHIVA) AUTUMN CONFERENCE, LONDON, UK Contact: BHIVA Secretariat, 1 Mountview Court, 310 Friern Barnet Lane, London N20 0LD Tel: 020 8446 8898 Fax: 020 8446 9194 Email: firstname.lastname@example.org Website: http://www.bhiva.org
15–17 April 2004 10TH ANNUAL CONFERENCE OF THE BRITISH HIV ASSOCIATION (BHIVA), CARDIFF, UK Contact: BHIVA Secretariat, 1 Mountview Court, 310 Friern Barnet Lane, London N20 0LD Tel: 020 8446 8898 Fax: 020 8446 9194 Email: email@example.com Website: http://www.bhiva.org