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PERCEIVED FAMILY SUPPORT AND CLINICAL OUTCOMES IN ADULTS ON ANTIRETROVIRAL THERAPY FOR HIV/AIDS IN OUR LADY OF APOSTLES HOSPITAL, JOS
SUMMARY
Background: The HIV pandemic is often associated with psychosocial issues like stigma and discrimination which may adversely affect clinical outcomes.
The general objective of the study was to determine the effect of family support on treatment outcomes in adults on Antiretroviral Therapy for HIV/AIDS in Our Lady of Apostles (O.L.A.) Hospital, Jos as a step in reducing the associated morbidity and mortality and ultimately reduce disease burden and its complications to the patient, family and healthcare facility.
Design: An observational study of a cross section of PLHIV attending the HIV clinic at O.L.A. Hospital, Jos. A total of 238 respondents were recruited. The level of Family Support was assessed using the Family Support Scale and medication adherence was measured using the Morisky Adherence Scale. Clinical outcomes included symptoms, difference in weight, CD4 count and viral load, adherence to ART and clinic visits.
Results: There was a significant difference in weight, CD4 count and viral load, adherence to clinic visits and ART in relation to the different levels of family support. Strong family support impacted positively on clinical and laboratory outcomes while weak/no family support impacted negatively.
Conclusion: Clinical outcomes in PLHIV can be improved by strengthening their family support. The role of the family in supporting clients should be integrated into the management of the illness at enrolment. Policy makers and providers should put more emphasis on strategic involvement of the family in the care of PLHIV.
TABLE OF CONTENTS
Declaration - - - - - - - - - i
Dedication - - - - - - - - - ii
Acknowledgement - - - - - - - - iii
Certification - - - - - - - - - iv
Table of Contents - - - - - - - - v
List of tables - - - - - - - - - viii
List of figures - - - - - - - - - ix
List of Abbreviations - - - - - - - - x
Summary - - - - - - - - - 1
CHAPTER ONE: INTRODUCTION
1.1 Background information - - - - - - 2
1.2 Statement of the problem - - - - - - 4
1.3 Aim and objectives of the study - - - - - 6
1.4 Rationale for the study - - - - - - 6
CHAPTER TWO: LITERATURE REVIEW
2.1 Introduction - - - - - - - - 8
2.2 Epidemiology of HIV/AIDS - - - - - - 11
2.3 Clinical features - - - - - - - 13
2.4 Diagnosis - - - - - - - - 18
2.5 Management - - - - - - - - 19
2.6 Issues with management of HIV/AIDS - - - - 26
2.7 Family support - - - - - - - 31
2.8 Impact of family support on health - - - - 36
CHAPTER THREE: MATERIALS AND METHOD
3.1 Study site - - - - - - - - 46
3.2 Study population - - - - - - - 46
3.3 Study design - - - - - - - - 46
3.4 Sample size - - - - - - - - 46
3.5 Sampling method - - - - - - - 47
3.6 Inclusion criteria - - - - - - - 47
3.7 Exclusion criteria - - - - - - - 48
3.8 Ethical consideration - - - - - - - 48
3.9 Study procedure - - - - - - - 48
3.10 Data analysis - - - - - - - - 49
CHAPTER FOUR: RESULTS
4.1 Introduction - - - - - - - - 51
4.2 Socio-demographic characteristics of participants - - - 51
4.3 Baseline clinical and laboratory characteristics of study participants- 54
4.4 Level of family support - - - - - - 59
4.5 Adherence to HIV medication - - - - - 61
4.6 Effect of family support on antiretroviral drug adherence - - 62
4.7 Relationship between family support and clinical/laboratory outcomes- 64
4.8 Effect of family support on adherence to clinic visits - - 65
CHAPTER FIVE: DISCUSSION
5.1 Sociodemographic characteristics of participants - - - 68
5.2 Baseline clinical and laboratory characteristics - - - 70
5.3 Level of family support - - - - - - 74
5.4 Adherence to HIV medication - - - - - 75
5.5 Effect of family support on antiretroviral drug adherence- - - 76
5.6 Relationship between family support and clinical/laboratory outcomes- 76
5.7 Effect of family support on adherence to clinic visits- - - 77
5.8 Conclusion - - - - - - - - 78
5.9 Recommendations - - - - - - - 79
5.10 Relevance of the study to Family Medicine - - - - 80
5.11 Strengths and limitations of the study - - - - 82
References - - - - - - - - - 84
APPENDICES:
CHAPTER ONE - INTRODUCTION 1.1 BACKGROUND INFORMATION
The family remains the most basic relational unit and intimate social environment in our society, and the family has a major influence on the physical and mental health of its members.1 Most people are born into a family, live much of their lives within a family, and consider it to be a high priority in their value system. A healthy lifestyle is usually developed, maintained, or changed within the family context. Family practice is unique as it focuses on the patient in the context of the family. The U.S. National Institute of Mental Health defined family as a “network of mutual commitment”, and it includes any group of people related biologically, emotionally or legally, and it also recognizes that the family is the primary source of health beliefs, healthrelated behaviors, stress and emotional support.2
The HIV/AIDS pandemic has been the most serious natural disaster to hit the world in recent centuries.3 In the worst affected regions, notably sub-Saharan Africa, this steadily progressing catastrophe threatens to become a calamity of cataclysmic proportions with Nigeria alone being home to nearly 3 million cases.4 In many of these resource-limited settings, there is a silent cry for socio-culturally appropriate strategies to stem the tide of serious morbidity and mortality risks.
The idealized extended family reported in anthropological and ethnographic studies relied on a variety of sources with which to cope with emergencies.3 Numerous epidemiologic studies have demonstrated that social support, particularly from the family, affects the outcome of many chronic illnesses, and is associated with improved health.5 Past research has revealed that HIV/AIDS is a family disease: when one member of the family has HIV/AIDS, the impact radiates through the entire family. When facing hardship related to HIV/AIDS, a strong and supportive family is one of the first lines of defence. Perceived social support is the degree that one perceives his or her needs for support are fulfilled by friends and family.6
Studies have suggested that a supportive social environment is essential for those living with HIV/AIDS.7 In the view of Caldwell, the family typically absorbs the burden of an AIDSaffected member.8 Family support has been shown to have significant effects on the control of blood glucose levels in diabetic patients in a study in Mexico9 and this was further corroborated by another study in Ibadan.10 It has also been shown to be positively related with asthma control and quality of life.11 The studies underscored the importance of incorporating family assessment and intervention in caring for people with chronic ailments. The advent of antiretroviral (ARV) drugs has transformed HIV/AIDS into a chronic manageable disease and strict adherence is required for the medication to be effective.12 Good adherence to antiretroviral therapy is critical to achieve the best virological response, lower the risk that drug resistance will develop, and reduce morbidity and mortality.13 Supportive family members have been shown to facilitate adherence, whereas feeling unloved or uncared for has been shown to be a barrier to adherence.14 A study in Ethiopia showed that patients who got family support were two times more likely to adhere to antiretroviral therapy than those who did not get family support as an independent predictor of overall adherence.13 Another study done in China showed that support provided by the family makes multiple levels of positive impact on people living with HIV/AIDS (PLWHA), suggesting the importance of including families in HIV/AIDS intervention programs.15 Family support included financial assistance, support in the disclosure process, daily routine activities, medical assistance, or psychological support. Muoghalu and Jegede, in their study also found that the burden of care for PLWHA was found to be on the family in the study area among the
Igbo of Anambra state. They concluded that cultural practices and the family play major roles in the care for PLWHA in the area and should be harnessed in order to make life more comfortable for PLWHA.16 Thus the role of the family in the management of HIV/AIDS patients is an untapped mine which needs further exploration. There is also a dearth of data on factors influencing adherence to ART in Nigeria,12 and this study aims to help in filling this gap.
1.2 STATEMENT OF THE PROBLEM
The HIV/AIDS pandemic is one of the worst epidemics that has been experienced by humankind. It is indeed a major event of our time. The pandemic has killed so many people around the world and Sub-Saharan Africa is the worst hit. Every minute, a Nigerian man, woman or child becomes infected with HIV.3 The nature of the pandemic lent it to stigma and discrimination, which has made caring for people living with HIV/AIDS (PLWHA) a big problem. It has also brought so much suffering on PLWHA around the world.16
HIV/AIDS or its complications, is one of the leading reasons for encounter by the Family Physician. WHO reports that as at 2010, about 34 million people were living with HIV infection globally, with Africa accounting for about 23 million people.4 Indeed, AIDS-related disorders have been said to account for up to 40% of admissions in treatment centers in Nigeria.17 In 2002, the National Intelligence Council had projected that by 2010, the number of people living with HIV/AIDS in Nigeria would be 26% of the adult population, approximately between 10-15 million people.3 However the World Health Organization put the prevalence of HIV infection among adults aged 15-49 years in Nigeria at 3.6% in 20094 with an estimated 2.9 million Nigerians living with HIV infection as at 2009.18 Approximately 1.4 million Nigerians need antiretroviral therapy based on WHO 2010 guidelines,4 and there were an estimated 170,000260,000 deaths due to AIDS in Nigeria in 2009.4 Life expectancy of the average Nigerian fell from 51 years in 1991 to 45 years in 2002, partly due to the HIV/AIDS epidemic.3 As compared to some other African countries where the level of the epidemic is low or concentrated to specific areas, the WHO classified the level as being generalized in Nigeria.18 These statistics show the immense gravity of the disease which is ravaging our populace.
However, current statistics about the epidemic in Nigeria do not reveal the broader social and economic impacts of the disease on the family. A study done in Lagos State showed that as the disease strikes a single individual in the family, other family members had to assume more responsibilities in taking care of the affected individual.19 HIV positive people are a group who have particular need for family support to help improve medication adherence, promote more open and positive communication, and decrease substance use and risky behaviors.20
Discrimination towards PLWHA by family, friends and the community has been shown to negatively affect their quality of life.21 Also loneliness prevails among PLWHA. Social support and family function was found to be negatively associated with loneliness commonly found amongst victims.22 Overall, HIV/AIDS has a negative impact on the whole population at large, the whole family and the whole individual directly-both biologically, socially and psychologically.
The overwhelming data shows the enormity of this pandemic which is having catastrophic effects globally as evidenced by the high morbidity and mortality figures. Many initiatives in both the public and private sectors have come up with attempts to tackle and manage this menace, but these efforts obviously cannot be maintained or sustained or have optimal impact without taking into cognizance the fact that families, not health-care providers, are the primary caretakers for patients with chronic illness. Could the answer lie in harnessing our naturally rich family support resources?
1.3 AIM AND OBJECTIVES OF THE STUDY
AIM
To determine the effect of family support on clinical outcomes in adults on Antiretroviral Therapy for HIV/AIDS in O.L.A. Hospital, Jos as a step in reducing disease burden and its complications to the patient, family and healthcare facility.
OBJECTIVES
- To determine the sociodemographic characteristics of the study participants in O.L.A. Hospital, Jos.
- To determine the level of family support among PLWHA on Highly Active Antiretroviral
Therapy (HAART) using the perceived social support family scale.
- To determine the effect of family support on antiretroviral (ARV) drug adherence.
- To examine the relationship between family support and clinical and laboratory outcomes in
PLWHA on HAART.
- To assess effect of family support on adherence to clinic visits among PLWHA.
1.4 RATIONALE FOR THE STUDY
There is insufficient evidence to show the impact of family support as an intervention in treating people living with HIV/AIDS (PLWHA) in developing countries.23 Family support affects PLWHA on many levels and includes financial assistance, support in the disclosure process, routine daily activities, and medical assistance or psychological support. Studies from developed countries suggest that family support makes multiple levels of positive impact on people living with HIV/AIDS.15 Mohanan showed that perceived family support for HIVpositive women predicts an increase in mental health across several areas and includes reducing anxiety, stress, depressive symptoms, and loneliness over a period of time.23 It was concluded however that more studies are required in developing countries before substantive conclusions can be drawn about the effects of family support in reducing morbidity and mortality in HIVinfected persons.
This study will attempt to answer the question of whether or not family support impacts positively on HIV outcomes, therefore this study will be relevant for Family Physicians and indeed other healthcare workers in Nigeria who provide healthcare in one form or another to
PLWHA’s at all levels. This study will also be important for Frontline doctors to understand the level of family support and family dynamics in order to be proactive while providing care to the growing number of PLWHA’s, thus adding to the ever growing body of knowledge of Family Medicine in Nigeria and indeed beyond its shores.
