CHAPTER ONE

INTRODUCTION

Background to the study

Increasing population of the world is affected by life limiting illnesses such as human immuno deficiency virus/acquired immune deficiency syndrome (HIV/AIDS) and cancer, which cause them and their families’ great suffering and economic hardship. The majority of the cases occur in the developing countries where there is limited accessibility to prompt and effective treatment for these illnesses (World Health Organization (WHO), 2012). The development of palliative care through effective low cost approaches is usually a good feasible alternative to respond to the urgent needs of the sick and improve their quality of life.

HIV is a human retro-virus. It is responsible for the progressive immune dysfunction that leads to AIDS and has resulted in about 35million deaths worldwide (WHO, 2013). HIV has expanded rapidly in every region of the world, AIDs is now one of the leading causes of death among people between 15-49 years old and of the world’s urgent public health challenge (United Nations Population Fund (UNFPA), 2008). Developing countries has been disproportionately affected with nearly one in every 20 adults (4.9%) living with HIV and accounting for 69% of the people with HIV worldwide (WHO, 2013). United Nations Population Fund (UNFPA) (2008), reported that Nigeria has a HIV prevalence of 4.6%. This translates to about 2.95million people living with the virus in the country.

The course of HIV/AIDs is highly variable and unpredictable with a wide range of potential complications. Some people living with HIV including those on antiretroviral therapy may remain free of serious symptoms for a longtime while others experience multitude of symptoms as the disease progresses. The high prevalence of HIV related manageable symptoms including fatigue, anorexia, weight loss, depression, agitation and anxiety, nausea

14

and vomiting, diarrhea, inadequate pain control with increasing dependency at all stages of the disease affect their quality of life (Harding et al, 2004).

This emphasizes the need for palliative care for these clients (United Nation Programme on HIV/AIDs (UNAIDs), 2000). Even with the widespread adoption of Antiretroviral Therapy (ART) in several countries since 1996 and the profound positive impacted it has on morbidity and mortality of HIV-positive clients, the need for palliative care has continued and is inevitable because of the still increasing prevalence of HIV infection, side effects of antiretroviral drugs such as gastrointestinal problems, new co-morbidities like end stage liver disease secondary to Hepatitis C co-infection, HIV related malignancies like Hodgkin’s lymphoma, due to survival prolongation (Harding et al, 2004).

Studies in Africa and Asia showed that people living with HIV (PLHIV) that were primarily on ART reported experiencing an average of 8-18 symptoms at any one time with the majority reporting at least one symptom (Green & Horne, 2012). These symptoms can translate into physical and emotional needs and reduce the quality of life of client (Harding et al., 2004) and (Green & Horne, 2012). Studies have also shown that the greater the number and the more severe the needs that PLHIV report, the lower their ART adherence level (Green and Horne, 2012). A study by Brinkhof et al, (2008), to examine data of 5,491 clients who began ART in 15 treatment programmes in Africa, South America and Asia revealed that, 21% of clients became lost within six months including 4% who were not seen after receiving their first prescription on ART. Another study in United States of America found that clients who report pain and or depression were less likely to be adherent than those without pain and or depression (Berg, Cooperman, Newville & Arnster, 2009). Poor adherence can lead to an

15

increased prevalence and severity of symptoms, treatment failure and increase in the risk of viral mutation and reduced quality of life (Green & Horne, 2012).

Palliative care provides an effective model for integrating many aspects of care that are essential in the management of HIV/AIDs (UNAIDs, 2000). WHO (2012) defines palliative care as an approach that improves the quality of life of clients and their families facing the problems associated with life threatening illnesses, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Palliative care includes any care that alleviates symptoms whether or not there is hope of cure by other means.

Green & Horne (2012), stated that lack of integration of palliative care in HIV services can result in late referral, unnecessary delays for treatment, transfer to an inappropriate setting of care, unnecessary suffering and cost to the clients. Provision of satisfying palliative care begins with effective assessment of clients’ in order to render care that will meet clients’ and his families’ needs. Needs are the issues that are necessary in order to perform well and to achieve certain goals. They possess challenges to clients’ quality of life. Department of Health, Western Australia (2008) stated that palliative needs are the variation in clients needs throughout the illness trajectory. The palliative care needs include: high physical symptom burden example pain, diarrhoea, vomiting, weight loss, etc, emotional distress, anxiety, hopelessness, discrimination, and unmet information and communication needs (O’Leary, Murphy, O’Loughin, Tiernan & McDonald, 2009). They affect clients, physical, psychosocial and spiritual aspects of life.

Needs and illness trajectories can be unpredictable. The ability to identify clients’ needs and related causal factors is essential for rational health decisions and actions to address the health

16

problems. A need assessment in health involves a systematic set of procedures that are used to review the health status, determine needs, examine their nature and causes and set priority for future actions that will improve health status (Migrant Education, 2001). Assessing palliative care need is a key factor for health service planning. In HIV-positive patients, it is more than making a diagnosis of physical problems(s), it requires that the clinician assesses the illness, person (including his/her emotional response and spiritual needs), person’s context (how the illness affects the whole family). These three (3) dimensions of assessment enables the clinician to deal appropriately with the whole person, identify needs, make a diagnosis, guide management plan, assess response to treatment and build therapeutic relationship (Cameron, Mngali & Sebuyira, 2006). This is because HIV infection affects not only the client’s physical functioning, but also his/her emotions, social and spiritual wellbeing, as well as that of his family. Sometimes, these needs may not be recognized and as such not managed. This makes the client to have multiple unresolved needs, which affects his/her quality of life. Thus the researcher intends to assess the palliative care needs of HIV-positive clients in Nnamdi Azikiwe University Teaching Hospital (NAUTH), Nnewi.

Statement of Problem

A number of advances have been made in care and treatment of HIV since the inception of the epidemic about three decades ago, such as use of ART. Due to this, Anti-retroviral Therapy (ART) now reaches nearly half of those eligible. People living with HIV (PLHIV) can now live longer than before and are able to establish families (WHO, 2011). Even with these tremendous gains, HIV/AIDS is still incurable and PLHIV continue to need help with the management of pain and other symptoms caused by opportunistic infections, medication side effects, depression that affect their quality of life and overall physical wellbeing as well as

17

their ability to adhere to treatment (Green & Horne, 2012). Also among the advances made were lots of studies on HIV/AIDS, but in Nigeria, most of these studies were on antiretroviral drug trials, and epidemiology of the disease, with no study on the symptoms experienced by the clients or their palliative care needs. Palliative care services are not readily available in Nigeria. Soyannwo (2013) stated that, emerging palliative care activities are available only in 21 States in Nigeria and Anambra State is not among the states; (appendix 3: figure iii). Furthermore, the researcher observed that, in a busy HIV clinic, physical and psychosocial symptoms may not always receive adequate or equal attention in the presence of limited expert human resources. These will make the clients to experience some unresolved needs. This was confirmed through interaction with some clients at HIV clinic; the researcher observed that, some clients complained that, symptoms like pain, depression, discrimination, lack of support, hinder them from maintaining appointment. Skipping appointment will add to the disease progression which worsens the symptoms and affects client’s quality of life. The researcher then asks; what is the magnitude of these needs among clients attending retroviral disease (RVD) clinic of Nnamdi Azikiwe University Teaching Hospital (NAUTH) Nnewi?

Objectives of study

The aim of the study is to assess the palliative care needs of HIV-positive clients attending RVD clinic of NAUTH Nnewi,South-East Nigeria. The specific objectives are to:

1.      Determine the physical needs of HIV-positive clients attending RVD clinic of NAUTH, Nnewi.

2.        Identify the psychological needs of HIV-positive clients attending RVD clinic of

NAUTH, Nnewi.

18

3.      Determine the spiritual needs of HIV-positive clients attending RVD clinic of NAUTH, Nnewi.

4.      Identify the socio-cultural needs of HIV-positive clients attending RVD clinic of NAUTH, Nnewi.

Hypotheses

1.      There will be no significant difference in the palliative care needs between HIV- positive clients with different demographic data (age, gender, level of education and occupation).