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UNIVERSITY OF MALAWI

College of Medicine

The Prevalence Of Psychological Distress And Associated Factors Among People Living With Aids Attending Antiretroviral Therapy Clinics In Mzuzu, Malawi: A Cross Sectional Descriptive Study.

By Charles Masulani Mwale Bachelor of Science in Nursing

Dissertation submitted in Partial Fulfillment of the Requirements for the Master of Public Health Degree. 30 November 2006

CERTIFICATE OF APPROVAL

The thesis of Charles Masulani Mwale is approved by the Thesis Examining Committee

_________________________________________________ (Chairman, Postgraduate Committee)

__________________________________________________ (Supervisor)

_________________________________________________ (Internal Examiner)

__________________________________________ (Head of Department)

Prevalence Of Psychological Distress And Associated Factors Among PLWAs in Mzuzu

Declaration I, Charles Masulani-Mwale, declare that this dissertation constitutes my own original work and has not been presented for any other awards or other purposes at University of Malawi or any other university. All references and other support have been acknowledged appropriately.

Name of Student:

Charles Masulani Mwale

Signature:

Date:

31st November 2006

Acknowledgements: I am sincerely indebted to the following for their support, encouragement and inputs, which facilitated this work: My wife and son, Chisomo for their support, perseverance and understanding my intermittent presence at home during study periods. My research supervisors Dr. Rob Stewart, for his technical supervision, financial support, and guidance during the preparation and write-up of this dissertation; Dr. Mathanga; Dr Kauye and for their direction during protocol development of this thesis report. Research assistants, Messsers Makwakwa, Jonasi, Chaula, Ngambi and Chimaliro and all research participants for their understanding and co-operation. The Hospitaller Order of St. John of God, Malawi, for financing my studies. God almighty, for his sustaining mercies and for raising me to this level.

DEDICATION:
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Prevalence Of Psychological Distress And Associated Factors Among PLWAs in Mzuzu

This dissertation is dedicated to my wife Patricia.

ABSTRACT: Background There are no much statistics of the extent on mental and psychosocial problems among people living with AIDS (PLWAs) in Malawi. In spite of the lack of the data regarding psychosocial problems in Malawi, studies of these problems in neighboring countries show that at least 10% of the general population is affected and the psychosocial problems are as common as infectious diseases (MOH, 2001). With this backdrop, this study determined the prevalence of psychological distress and associated factors among PLWAs attending anti-retroviral (ARV) clinics in Mzuzu. It is believed that the findings of the study will help to enlighten health care providers and policy makers on the extent of the problems and guide interventions to ensure that PLWAs receive a complete and comprehensive health package as recommended by WHO. Objectives of the study: The objective of this study was to determine the prevalence of psychological distress and associated factors among PLWAs attending ARV clinics in Mzuzu City. Methods A cross-sectional survey was done among PLWAs attending ARV clinics at Mzuzu Central and St. Johns hospitals, in Mzuzu. 440 clients were sampled using systematic sampling. The Self Reporting Questionnaire (SRQ) a measure of psychological distress, and a questionnaire measuring social demographic and other predictive factors for psychological distress were administered verbally to the participants. Ethical clearance, institutional authority and consent for the study were sought from COMREC, medical directors of the two institutional sites and participants of the study respectively. SPSS and STATA were used to analyze data to address research objectives of the study. Findings: On demographic characteristics of the participants, young age, being female, low education, joblessness, and poor social economical status were associated with psychological distress. It was also found that 14.4% of this sub-sample was

psychologically distressed while 4.5% had suicidal feelings. On the clinical part, shorter duration on ARVs, non-availability of psychological support were some of the factors 6

Prevalence Of Psychological Distress And Associated Factors Among PLWAs in Mzuzu

that were significantly associated with psychological distress. Outcome of logistic regression did not give any statistically significant interaction or confounding brought by age, sex and social-economic status in the significant relationships. The associated factor for the suicidality was sex with females being more likely to report this symptom than men (P=0.05) Conclusion: It is recommended that health care providers do thorough assessments to address psychological problems for PLWAs comprehensively.

Table of Contents:

Page

CERTIFICATE OF APPROVAL ...........................................................................2 DECLARATION....................................................................................................3 ACKNOWLEDGEMENTS: ...................................................................................4 ABSTRACT: .........................................................................................................6 LIST OF FIGURES SHOWING:...........................12 ACRONYMS:......................................................................................................13 CHAPTER ONE: INTRODUCTION ....................................................................14
1.1 Introduction ...........................................................................................................................................14 1.2 Background............................................................................................................................................14 1.3 HIV/AIDS profile: .................................................................................................................................15 1.4 Mental Health Profile for Malawi........................................................................................................17 1.5 Psychological distress, depression and HIV/AIDS .............................................................................17 1.5.1 Prevalence of psychological distress ...............................................................................................17 1.5.2 Determinants of psychological distress and major depression among PLWAs...............................19 1.5.3 Cost and burden of psychological distress.......................................................................................21 1.5.4 HIV/AIDS and Psychological Distress:...........................................................................................22 1.6 The future: .............................................................................................................................................25 1.7 Statement of the Problem and Rationale for the research project: ..................................................25 1.8 Definition of terms.................................................................................................................................26 1.9 Objectives of the study ..........................................................................................................................28 1.9.1 Broad Objective...............................................................................................................................28 1.9.2 Specific Objectives ..........................................................................................................................28 1.10 Research hypotheses............................................................................................................................28

CHAPTER TWO: METHODOLOGY...................................................................30


3.1 Introduction ...........................................................................................................................................30

Prevalence Of Psychological Distress And Associated Factors Among PLWAs in Mzuzu

3.2 Study design ...........................................................................................................................................30 3.2.1 Validity of the design ......................................................................................................................30 3.2.2 Confounding variables.....................................................................................................................31 3.2.3 Dependent and independent variables: ............................................................................................31 3.3 Study Place.............................................................................................................................................31 3.4 Study Population ...................................................................................................................................31 3.5 Study Period...........................................................................................................................................32 3.6 Sample Size ............................................................................................................................................32 3.7 Data Collection: .....................................................................................................................................33 3.7.1 Instrumentation ................................................................................................................................34 3.7.2 Validity of data collection tool ........................................................................................................35 3.8 Data Management and Analysis .........................................................................................................36 3.9 Ethical Considerations ..........................................................................................................................37 3.10 Dissemination of the Results...............................................................................................................39

CHAPTER THREE: STUDY FINDINGS .............................................................40


4.0 Introduction:..........................................................................................................................................40 4.1 Sample description: ...............................................................................................................................40 4.2 Social demographic characteristics of the participants .....................................................................40 AGE..........................................................................................................................................................41 Sex and Marital status...............................................................................................................................41 Educational status .....................................................................................................................................42 Current occupation ...................................................................................................................................42 Social economical state.............................................................................................................................42 VARIABLE ..............................................................................................................................................42 4.3 Other social-clinical characteristics of the participants.....................................................................44 HIV staging as recorded on the clients card............................................................................................44 Duration on ARVs ....................................................................................................................................45 Availability of psychological support (confidant) ....................................................................................45 Support with Daily activities ....................................................................................................................46 Disclosure of own HIV status...................................................................................................................46 Attendance to an HIV/AIDS support group .............................................................................................46 VARIABLE ..............................................................................................................................................47 4.4 Prevalence of psychological distress: ...................................................................................................47 4.5 Univariate Analysis: ..............................................................................................................................48 4.5.1 Social demographic characteristics of the participants associated with psychological distress: .....48 4.5.2 Other clinical characteristics of the participants associated with psychological distress: ...............50 4.7 Logistic regression: Social-clinical factors adjusted for age, Sex and social-economic status: ......51 4.8 Other significant findings: ....................................................................................................................52

CHAPTER FOUR: DISCUSSIONS, STUDY IMPLICATIONS, RECOMMENDATIONS AND CONCLUSIONS. .................................................53


5.1 Introduction:..........................................................................................................................................53 5.2 Status of research objectives ................................................................................................................53 5.2.1. Prevalence of psychological distress: .............................................................................................53 5.2.2. Associated factors...........................................................................................................................54 5.3 Logistic regression: Social-clinical factors adjusted for age, Sex and social-economic status: ......60 5.4 Possible limitations of this study:.........................................................................................................60 5.5 Implications and recommendation: .....................................................................................................61 (A) Implications for Health practice and education..................................................................................61 (B) Implications for Research:..................................................................................................................63 (C) Implications for policy: ......................................................................................................................64 (D) Recommendations:.............................................................................................................................65 5.6 Conclusions: ...........................................................................................................................................66

REFERENCES: ..................................................................................................67 APPENDIX..........................................................................................................75


I Questionnaire/ Consent Form (English) .................................................................................................75 Consent statement: ......................................................................................................................................76 I (B) Consent Form/Questionnaire (Tumbuka/Chichewa) ......................................................................82 Section A. Social-Demographic Characteristics .......................................................................................83 II Study personel: ........................................................................................................................................87 III Budgetary Estimates and Justification ................................................................................................87 V. Gannts Chart showing the research period. ......................................................................................89 Approval letter from Post graduate committee ........................................................................................90 ETHICAL CLEARANCE LETTERS. ......................................................................................................91 VI (a) Clearance letter to COMREC.........................................................................................................91 VI (b) Approval letter from COMREC.....................................................................................................92 VII. Clearance letters. ................................................................................................................................93 VII (A) Clearance letter from Researchers institution ...........................................................................93 VII (b) Clearance letter to Mzuzu Central Hospital ................................................................................94 VII (c) Approval letter From Mzuzu Central Hospital. ............................................................................95 VII (d) Clearance letter to St. Johns Hospital..........................................................................................96 VII (e) Approval letter from St. Johns Hospital. .....................................................................................97

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Prevalence Of Psychological Distress And Associated Factors Among PLWAs in Mzuzu

VIII. WHO clinical staging of HIV/AIDS and HIV/AIDS.......................................................................98 Clinical stage 1 .........................................................................................................................................98 Clinical stage 2 .........................................................................................................................................98 Clinical stage 3 .........................................................................................................................................98 Clinical stage 4 .........................................................................................................................................98

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List of Tables showing: 1. Social-demographic characteristics of the study respondents 2. Clinical characteristics of the study respondents 3. Relationship between social-demographic characteristics of respondents and psychological distress 4. Relationship between other clinical characteristics of respondents and psychological distress 5. Significant clinical variables adjusted for age, sex and social-economic status. 6. Personnel involved in the study 7. Study budget of the study 8. Gantts Chart of the study

List of Figures showing:


1. Age categories in percentages 2. Marital state of the study respondents 3. Participants occupational distribution 4. WHOs HIV staging characteristics of respondents 5. Participants duration on ARVs 6. Participants sources of psychological support (in Percentages).

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Prevalence Of Psychological Distress And Associated Factors Among PLWAs in Mzuzu

Acronyms: HIV/ AIDS: Human Immuno-deficiency Virus/ Acquired Immunodeficiency Syndrome WHO: PLWAs: ARV: SRQ: HIV+: HIV-: COMREC: DSM-IV: World Health Organization People living with AIDS Antiretroviral Self-Reporting Questionnaire HIV positive HIV negative College of Medicine Research Ethics Committee Diagnostic Statistical Manual, Version IV

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CHAPTER ONE: INTRODUCTION


1.1 Introduction This chapter presents the context of this study. It highlights literature on mental health and psychological distress and its predictive factors among people living with HIV/AIDS. It then looks at statement of the problem, rationale, objectives, and provides an overview of this research study.

1.2 Background The overall prevalence of HIV among Malawians aged 15-49 years is 12% (NSO & ORC Macro. 2005). On the other hand, there is little robust data on the extent of mental and psychosocial problems in Malawi, let alone data on such psychosocial problems among people living with AIDS (PLWAs) (MOH, 2001). However, prevalence studies of these problems amongst general population samples in neighboring countries show that at least 10% of the population is affected (MOH, 2001). Currently, HIV interventions focus primarily on the physical care and not much on the psychological aspects. Evidence from literature from the West indicates that a significant proportion of people presenting at general clinics has a psychiatric disorder (Royal College of Physicians, 2003). In sub-Saharan Africa, prevalence studies of these disorders amongst general population samples show that at least 10% of the population is affected (MOH, 2001). On the other side, reported prevalence of psychiatric disorder in people presenting with symptoms explained by chronic illnesses like AIDS, is 1520%; while in patients who present with medically unexplained symptoms it is approximately 50% (Van Hemert, Hengeveld, Bolk, Rooijmans & Vandenbroucke, 1993; & Jackson, Fiddler, Kapur, Wells 14

Prevalence Of Psychological Distress And Associated Factors Among PLWAs in Mzuzu

& Creed, 2005). The latter group accounts for one third or more of all medical outpatients (Jackson, et.al, 2005; Hamilton J, Campos R, Creed 1996; Nimnuan C, Hotopf M, Wessely 2001; & Reid S, Wessely S, Crayford T, Hotopf, 2002). It is not known whether this pattern is also seen among patients presenting at our ARV clinics. The above estimates should be an underestimate of the problems in our ART clinics, considering the impact of physical on psychological problems. Several studies have demonstrated a high prevalence of depression in Pakistan and India, and this may be reflected in our clinics despite some cultural and social-economic differences that may exist (Mumford, Nazire, Jilani & Baig 1996; Husain, Creed & Tomenson, 2000; Patel, Abas, Broadhead, Todd & Reeler, 2002; Mumford, Saeed & Ahmad 1997; and Mumford, Minhas, Akhtar, Akhter & Mubbashar, 2000). It is nevertheless, not known in Malawi what predicts the prevalence of psychological distress among PLWAs. This section reviews studies that have focused on the prevalence of mental disorders and associated factors among HIV+ individuals in other countries.

1.3 HIV/AIDS PROFILE:

With more than 25.8 million people living with HIV/AIDS; 3.2 million newly infected; 85% deaths due HIV; and about 11 million children orphaned by AIDS, at the end of 2005, Sub-Saharan Africa has been the Epi-Center of this epidemic (UNAIDS, 2006). Sub-Saharan Africa has just over 10% of the worlds population, but is home to more than 60% of all people living with HIV

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Malawi still has one of the alarming HIV prevalence rates, with 12% of adults aged 1549 infected with HIV as per 2004 Demographic and Health Survey report (NSO, 2005). However, UNIADS, (2006) estimated that 14.1 [6.9 21.4]% of adults aged 15 to 49 were ling with AIDS by end 2005. The prevalence is higher among women than among men (13 and 10% respectively. The specific prevalence rate also peaks up to 18% for women, and 20% for men aged 30-34 (NSO, 2005)

Efforts have been put in place in mitigating the impact of HIV in Malawi. These have included HIV counseling and testing; home based care, prevention of mother to child transmission of HIV including care for the vulnerable groups like orphans (MOH, 2003). The addition of anti-retroviral therapy, in AIDS care, has dramatically improved the survival of PLWAs. In 2002 Malawi started giving the ARVs in its two central hospitals in Lilongwe and Blantyre and Chiradzulu District Hospital (MOH, 2003). The government has built on this existing service by rolling out ARV therapy throughout the country in a phased manner. Government, mission and some private care providers are currently providing the ARVs and treatment for opportunistic infections in different health institutions in the country. With the current profile of mental health services, there is no regular attention to mental health needs of these PLWAs. With the highlighted statistics above the Malawi National AIDS Commission estimated that about a million people were living with HIV/AIDS in the country resulting in more than 50,000 to 70,000 adult and child deaths annually, respectively (MOH, 2003).

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Prevalence Of Psychological Distress And Associated Factors Among PLWAs in Mzuzu

1.4 MENTAL HEALTH PROFILE FOR MALAWI According to the Malawi Mental health policy, there has not been any national data on the extent and nature of mental, behavioral, neurological as well as drug related disorders in Malawi. Available hospital records indicate that the profile of mentally ill patients in Malawi is not dissimilar to that in other parts of Africa (St. John of God Mental Services, 2004}. Between 10-18% of adults and 11-29% of children seen at primary health care clinics have varying forms of mental disorders (MOH, 2001). Despite this background there are several constraints in the delivery of mental health services in Malawi. For example, increasing population, non-availability of mental health facilities in rural areas, and health professionals in the country, further worsens current burden of mental disorders.

1.5 PSYCHOLOGICAL DISTRESS, DEPRESSION AND HIV/AIDS Evidence from meta-analysis suggests that psychological distress and major depression are common psychiatric complications of HIV/AIDS (Clesta & Roberts, 2001). This section looks at the relationship between mental health problems in relation to HIV and their predictor variables.

1.5.1 Prevalence of psychological distress As, highlighted above, there is no data locally on mental disorders in the general population let alone among PLWAs. However, PLWAs from other countries have reported depressive symptoms since the genesis of this disease, but there has been a wide range of reported prevalence rates. Most literature has been on depression and not necessarily on psychological distress. The prevalence rates have ranged between 5% and

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20% across the majority of studies (Atkinson et al 1988; Lipsitz et al 1994; Perkins et al 1994; Stern et al 1992). In other studies the prevalence has ranged from 0% (Fukunishi & Hosaka, 1997) to 47.8% (Dew et.al, 1997). This variability is likely due to differences in designs in patient sampling techniques, especially with regard to demographics (sex, age), disease stage and treatment status, assessment strategies, and co-morbidity of other psychiatric conditions. Patients with HIV should therefore be routinely assessed and appropriately treated for depression. Although it is well documented that women report higher rates of depression than men in the general population (Blazer et al 1994), most of the prevalence studies of depression in HIV disease have focused almost exclusively on men. A few studies have examined rates of depression among samples including both men and women. Rabkin et al (1997) examined an intravenous drug-using cohort of 121 men (69 with HIV, 52 without HIV) and 66 women (36 with HIV, 30 without HIV) over 3 years. At baseline assessment, rates of major depression and dysthymia ranged from 15% (HIV positive men) to 33% (HIV positive men and positive HIV women). For HIV positive individuals, degree of mood improvement over time was related to HIV progression (i.e., those who remained healthier based on CD4 count and illness stage showed mood improvement over time). In a five-site World Health Organization study including both men and women, of varying social-economic background, prevalence rates of major depression ranged from 4.0% to 18.4% among HIV symptomatic individuals and 3.0% to 10.9% among asymptomatic individuals (Maj 1996). In two sites, women had higher depression scores than men, but complete data on gender differences across all five sites was unavailable. In one meta-analysis of ten studies comparing prevalence of depressive prevalence

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Prevalence Of Psychological Distress And Associated Factors Among PLWAs in Mzuzu

among infected people and those at risk of being infected by HIV, it was reported that the frequency of major depressive disorder among the HIV participants was almost twofold that of the at-risk individuals (Ciesla & Roberts, 2001). Prevalence rates of major depression among exclusively HIV women have varied widely. Rates among clinical samples have ranged from 1.9% to 35% (Boland et al 1999; Goggin et al 1998; McDaniel et al 1995; Taylor et al 1996) and from 30% to 60% among community samples (Moore et al 1999; Smith et al 1996). The range of prevalence rates of depression among HIV women is believed to result from differing methodologies (point versus life-time prevalence rates) and study populations and in some cases the use of small samples. Larger scale prevalence studies of HIV women are starting to emerge. Ickovics et al (2001) studied 765 HIV women and reported that 42% had chronic depressive symptoms and 35% had intermittent depressive symptoms.

1.5.2 Determinants of psychological distress and major depression among PLWAs

As highlighted above, there is evidence that psychological distress and other mental disorders are common problems and complications of HIV/AIDS among PLWAs. There are various findings about factors associated with psychological distress and depression. Some studies have found a relationship between psychological distress among PLWAs and prior negative events (Moore, Schuman et. Al, 1999) while others have not (Evans, Lessserman & Perkings, 1995).

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Several social-demographic factors like female gender (Linchtenstein, Laska & Clair 2002), younger age (Clesla et al, 2001) and low social economic status (Moore et al, 1999) were found to increase the risk for psychological distress among PLWAs. Further to this, depression in Pakistan, where HIV prevalence is less than 2%, was found to be associated with severe financial and housing problems, few years of education, and numerous children (Husain, Creed, Tomenson, 2000; & Mumford, Saeed, Ahmad 1997). Other factors found to be associated with depression among the PLWAs include symptomatic and advanced HIV clinical stages (Maj, 1997) & Clesla et al, 2001); including history of substance abuse and risky sexual practice (Kalichman, 1999). Other studies also suggest that social support can buffer the effects of psychosocial and physical stress on individuals (Broadhead et al., 1983; Cohen, Wills, 1985 & William et.al 2005). Depression among PLWAs is associated with unavailability of antiretroviral medication and to HIV disease progression even among PLWAs who adhere to HIV/AIDS medication regimes (Leserman, 2003). (Fleming et al., 2004) also found that factors independently associated psychological distress among persons infected either with HIV, HCV or both, are age, unemployment and injection drug use. William et. al, 2005 also reports that HIV associated problems with quality of life, depression and fatigue, among people living with HIV/AIDS, can be primarily explained by unstable housing, lack of employment, low education and low income. Fatigue is also an important and debilitating symptom for people with HIV/AIDS infection (Dwight et al., 2000; Obhrai et al., 2001). Fatigue is also a well-documented

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Prevalence Of Psychological Distress And Associated Factors Among PLWAs in Mzuzu

adverse effect of anti retro viral treatment (Cotler et. al., 2001; Hoofnagle et al., 1996; Sepp et al., 1995). Although the majority of men assessed in these studies seem to effectively adjust to HIV disease, a significant number experience mood disturbances. Thus, HIV patients should be routinely assessed and appropriately treated for depression. Although it is well documented that women report higher rates of depression than men in the general population (Blazer et al 1994), most of the prevalence studies of depression in HIV disease have focused mostly on men. While there is less data regarding HIV infection and fatigue, sleep disorders are also an important issue for this population, with prevalence reports of 30-40% (Robbins, & Phillips, 2004 and Sullivan & Dworkin, 2003). Chronic fatigue syndrome in HIV positive individuals has also been found to be associated with varying symptoms like pain (Robbins et al., 2004), depression (Robbins et al., 2004 and Sullivan et. al., 2003); and anxiety (Robbins et al., 2004).

1.5.3 Cost and burden of psychological distress The burden of mental health and neurological disorders on society is immense. The 2001 World Health Organization Report estimated that, measured in disability-adjusted life years (DALYs), mental and behavioral disorders accounted for 12% of the global burden of disease in 2000. The report, projects that this figure will increase to 15% by 2020. In the 15- to 44-year age group, the health burden resulting from unipolar depression is currently second only to HIV/AIDS. In terms of years of life lost to disabilities (YLDs) alone, it was estimated that in 2000, mental and neurological disorders accounted for

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around 31% of YLDs, with depression contributing 12% of all disability across all age groups, and 16% in the 15- to 45-year age category. Further, as people living with HIV/AIDS (PLWAs) live longer, healthrelated quality of life and the consumption of health and social services have assumed increasing importance (William et.al 2005). Psychological distress is further associated with poorer health and greater health service utilization among the PLWAs and those having other medical illnesses (Simon, Ormel, VonKorff, & Barlow, 1995; Wells, Rogers, Burnam, Greenfield, & Ware, 1991). Recent research suggests that psychological distress may similarly affect the quality of life (Kalichman, Heckman, Kochman, Sikkema, & Bergholte, 2000; Kemppainen, 2001), social support and disclosure status (Kalichman, DiMarco, Austin, Luke & DiFonzo, 2003), and service utilization (Sambamoorthi, Walkup, Olfson, & Crystal, 2000) among PLWAs.

1.5.4 HIV/AIDS and Psychological Distress: Human immunodeficiency virus sero-positive (HIV) individuals may be at an increased risk of developing psychiatric disorders. As seen above, in addition to data regarding HIV infection and mental disorders fatigue and sleep disorders are an important issue for this patient population, with prevalence reports of 30-40% (Robbins, at al, 2004; Sullivan & Dworkin, 2003). The fatigue syndrome in HIV positive individuals has been found to be associated with distressful symptoms (Robbins et al., 2004; Sullivan & Dworkin, 2003), pain (Robbins et al., 2004), depression (Robbins et al., 2004; Sullivan & Dworkin, 2003) and anxiety (Robbins et al., 2004).

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Prevalence Of Psychological Distress And Associated Factors Among PLWAs in Mzuzu

Another recent epidemiological study assessed a nationally representative sample of 2,864 HIV patients, and found that nearly half screened positive for a psychiatric disorder, including major depression, dysthymia, and generalized anxiety disorder (Bing et al 2001). More than one third screened positive for major depression, and more than one quarter for dysthymia. It should be noted that these rates were based on screening instruments and significantly exceed clinical interview based diagnostics assessments. Since mood disturbances are often viewed as one of the most common psychiatric symptoms reported by HIV individuals, and clinicians, therefore, need to actively identify those individuals at risk and ensure the availability of appropriate treatments (Bing et. al. 2001). Overall, there is compelling evidence that mood disorders are at higher prevalence rates in HIV individuals than in the general population, and that psychopharmacologic interventions can improve mood during the course of HIV disease. Conversely, most psychiatric disorders among HIV individuals are frequently unrecognized and untreated (Evans et al 1996), and this necessitates the need for urgent action to enhance comprehensive care for people living with AIDS. The assessment of mood disorders during HIV disease poses a number of unique challenges, including that mood disorders can be considered primary or secondary to the medical illness. Treisman et al (1998) have noted that the primary group may have a previous history of a mood disorder but have prevalence rates similar to traditional risk groups, such as homosexual men and injection drug users. Those with mood disorders secondary to HIV do not necessarily have a prior history or a familial history, and the

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affective disturbance most likely results from viral infection and central nervous system (CNS) brain involvement. There is no consistent evidence that depressive symptoms increase as HIV disease progresses. Although Lyketsos et al (1996) found an increase in depressive symptoms approximately 1.5 years before the onset of acquired immunodeficiency syndrome (AIDS), Rabkin et al (1997b) showed that depression did not increase despite worsening HIV infection over a four-year period. On the other hand, Goggin et al (1997) found that HIV depressed and non-depressed men did not differ on global neuro-cognitive impairment, although the depressed individuals exhibited greater memory impairment. The clinicians must consequently consider the possibility of a spontaneous onset of first episode as well as a recurrence of depression in a recently diagnosed HIV individual. Distinguishing between primary and secondary mood disorders among HIV patients requires a thorough assessment of affective symptoms both current and past and a comprehensive evaluation of medical and neurologic contributions. For example depression in Pakistan where HIV prevalence is lower than 2% is no different from other areas of high HIV (Husain, Creed, Tomenson, 2000; & Mumford, Saeed, Ahmad 1997). Further to the above difficulty, it has to be noted that diagnosing major depression among HIV individuals is also complicated by the fact that several symptoms of depression (e.g., fatigue, sleep disturbance, and weight loss) are also common symptoms of HIV disease (Norman et al 1992; Perkins et al 1995). In addition, depressive symptoms may also mirror symptoms associated with a co-morbid substance related disorder (Regier and Farmer 1990). Because of these overlapping physical and psychological symptom features, mood disorders may be under-diagnosed

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Prevalence Of Psychological Distress And Associated Factors Among PLWAs in Mzuzu

and inadequately treated. Thus, a thorough medical and psychiatric assessment is warranted.

1.6 THE FUTURE: As a way forward, it appears that it is imperative to provide comprehensive AIDS care to PLWAs and to improve their coping abilities and quality of life by recognising and treating concurring mental health problems. Further to this, PLWAs require improved monitoring of psychotic and anti-retroviral medication. There is need for increased training and support from experienced mental health professionals, so that primary health care staff and volunteers could more effectively recognise psychological distress and other mental health problems, link the PLWAs with HIV clinics, offer appropriate medication to PLWAs, and help PLWAs stay on prescribed medication (William et. al, 2005). As seen in the interaction between HIV and psychological distress it is evident that some of the problems faced by PLWAs may be more appropriately addressed through mechanisms that are non-biological. In the primary health care setting, this may require additional psychosocial support and programming, as well as interventions aimed at the psychological distress.

1.7 STATEMENT OF THE PROBLEM AND RATIONALE FOR THE RESEARCH PROJECT: Freeman et. al. (2005), argue that a successful HIV/AIDS intervention program must include the assessment of mental disorders and their appropriate management as part of the normative service. They add that there is a need to develop appropriate materials and

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models for the delivery of mental healthcare within the parameters of the WHOs 3 by 5 initiative based on the principles of affordability, acceptability and availability. The integration of mental health into this initiative presents an excellent opportunity to strengthen the status of mental health in public health services in developing countries. It provides an important chance to improve the health of people with HIV and to expand mental health services in general health services (Dew et. al, 1997). Without data on the prevalence of psychological distress and its associated factors among PLWAs, all the above statistics will remain unsubstantiated in Malawi unless a study of this nature is done. It is hoped that achievement of the objectives below will help to bridge this gap and help provide base line data for planning, program development and evaluation, to promote the comprehensive care provision for the PLWAs as we rollout the ARVs services in Malawi.

1.8 DEFINITION OF TERMS 1.8.1 Psychological distress: This refers to a combination of emotional syndromes, involving varying mood and vitality levels, characterized by depression, anxiety, and somatisation (Townsend, 2001)

1.8.2 Depression:

This is defined as a lowered mood or loss of interest or pleasure in

all or almost all activities for almost a period of two weeks. There is presence of at least five of the following: diminished mood; diminished interest in activities; weight loss or gain; insomnia or hypersominia; psychomotor agitation or retardation; fatigue; feelings of

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Prevalence Of Psychological Distress And Associated Factors Among PLWAs in Mzuzu

worthlessness; inappropriate guilt; diminished ability to think or concrete; and recurrent thoughts of deaths (APA, 1994).

1.8.3 Mania: The opposite of depression, mania is defined as a psychotic disorder whose main feature is abnormal elevation of mood; increased energy; and acceleration of mental and physical activity (Lyttle, J., 1986).

1.8.4 Anxiety: Denotes a vague and uneasy feeling of discomfort or dread accompanied by an autonomic response; the source is often non-specific or unknown to the individual; a feeling of apprehension caused by anticipation of danger (APA, 1994).

1.8.5 Somatisation:

This refers to a syndrome of multiple somatic symptoms that can

not be explained medically and are associated with psychosocial distress and long term seeking of assistance from health care professionals (APA, 1994).

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1.9 OBJECTIVES OF THE STUDY

1.9.1 Broad Objective The broad objective of this study was to determine the prevalence of psychological distress (depression/anxiety/somatisation) and its associated factors among PLWAs in Mzuzu City.

1.9.2 Specific Objectives This study aimed at: a) Determining the prevalence of the psychological distress amongst PLWAs attending Rainbow (ARV) clinics at St. Johns Hospital and Mzuzu Central Hospital in Mzuzu city. b) Establishing risk factors for psychological distress amongst the PLWAs.

1.10 RESEARCH HYPOTHESES It was hypothesized that: (a) PLWAs having an advanced HIV disease stage will have more psychological distress compared to those who are in early stages. (b) PLWAs who have not started or have just started ART will have more psychological distress compared to those who been on ART for sometime (>6 months). (c) PLWAs having no confidant partner to give psychological support will have more psychological distress compared to those who have.

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Prevalence Of Psychological Distress And Associated Factors Among PLWAs in Mzuzu

(d) PLWAs having no support in their daily activities will have more psychological distress compared to those having the support. (e) PLWAs who have not disclosed their sero status will have more psychological distress compared to those who have disclosed their sero status. (f) PLWAs not attending to an HIV/AIDS support group will have more psychological distress compared to those belonging to one.

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CHAPTER TWO: METHODOLOGY

3.1 INTRODUCTION This chapter explains the study methodology. A cross-sectional study design was used to address the study hypothesis raised in section 1.7 of this report. 3.2 STUDY DESIGN This study was a cross-sectional one. This is a study design whereby measurements of exposure and effect are made at the same time. It is an easy and an economical design for investigating exposures that are fixed characteristics of individuals (Beaglehole, 2002).

3.2.1 Validity of the design On validity of the design: the sample size was large enough to avoid Type II error (Statistical conclusion validity); there was systematic sampling of research participants to enhance internal validity. The limitation of the design is its difficulty in assessing the directions for association because it is hard to determine if exposure (explanatory factors) preceded the effect (psychological distress) in a cross-sectional study like this one (Beaglehole, 2002). The other limitation was that a formal inter-rater reliability analysis was not done in the study, however this is not a real problem as the questionnaire was highly structured.

30

Prevalence Of Psychological Distress And Associated Factors Among PLWAs in Mzuzu

3.2.2 Confounding variables Variables like age, social economic status and gender (Refer Appendix I), which usually influence dependent and independent variables in a study were considered to rule out their influence. These were adjusted for during analysis as, explained in section 4.7 of this report. Systematic sampling of research subjects was also made to control for these.

3.2.3 Dependent and independent variables: Psychological distress was the main outcome (dependent variable) while demographic factors (age, sex, socio-economic status) and factors predicted to be associated with psychological distress (HIV staging, duration on ART, disclosure of sero-status and support network) were the explanatory factors (independent variables).

3.3 STUDY PLACE This study was conducted in ARV clinics at Mzuzu Central and St. Johns Hospitals, in Mzuzu.

3.4 STUDY POPULATION PLWAs attending Mzuzu Central Hospital and St. Johns ARV clinics in Mzuzu were sampled using systematic sampling, whereby every third client was requested to participate in the study. Regarding selection/inclusion criteria, those PLWAs (both male and females) aged 18 and above were recruited for the study after completing registration at the clinic.

31

3.5 STUDY PERIOD The study period was nine months. This period incorporated: conceptualizing the research area; literature review; draft proposal submission to post graduate committee; proposal write up; initial translation of research instruments; protocol submission to COMREC; training of research assistants; data collection and analysis; and report writing (Refer to the Gannts Chart in appendix V).

3.6 SAMPLE SIZE Sample size was calculated based on prevalence estimates from a recent epidemiological study which assessed a nationally representative sample of 2864 HIV+ patients, and found that nearly half screened positive for a psychiatric disorder, including major depression, dysthymia, and generalized anxiety disorder (Bing, & Treisman,1996). Therefore, a prevalence of psychological distress of 50% was assumed among PLWAs. Using the formula by Lwanga & Lameshow (1992) for calculating sample size for a cross sectional survey, sample size was calculated using the formula below:

Estimated sample size =

(Z) 2 PQ D2

In this case confidence intervals was set at 95% hence Z was 1.96, where Z is the normal variate corresponding to the level of significance; P is the proportion with the disorder while Q is the proportion without the disorder (1-p).

Therefore,

32

Prevalence Of Psychological Distress And Associated Factors Among PLWAs in Mzuzu

n=(Z) 2 PQ D2

(1.96) 2 x .5 x .5 .05 x .05

0.9604 0.0025

= 384

To give an allowance for refusal rate, 440 participants were selected by systematic sampling. Thus every third client attending the Rainbow clinic was recruited for the study and 438 participants had participated in the study. Those individuals who gave written consent, (Refer questionnaire- Appendix A.) were interviewed for the study. Currently, about 80 new and 300 subsequent clients attend these ARV clinics per week. Assuming a refusal/exclusion rate of 10% and screening every third patient, this allowed data to be collected in a month. This was achieved, as one assistant would interview at least 10 participants per day.

3.7 DATA COLLECTION: The investigator and four assistants (ARV nurses) collected quantitative data at the two clinics. The assistants initially were given a three days training in the study methodology and psychological distress as well as its correlates. Participants were recruited after registering at the ARV clinic. The investigator and four assistants explained the purpose of the study and sought informed consent from participants. They verbally administered the survey questionnaire to consenting participants in rooms that provided privacy. This took 15 to 20 minutes. This was just done at this one point in time. The questionnaire had three components: (1) Self-Reporting Questionnaire (SRQ) as the measure of psychological distress, (2) Demographic information questions, and (3)

33

measures of predicted associated factors (HIV/AIDS staging, disclosure, duration on ARV and social support) [Refer appendix I].

3.7.1 Instrumentation As described above, the study questionnaire had the three components:, demographic information, measures of associated factors for psychological distress and the SRQ. The first component recorded socio-demographic information (age, sex, religion, education, occupation, marital state, and a proxy of social economic status). A proxy for social economical status (having a brick and an iron-roofed house) was used because it is convenient and that people usually do not give accurate information when asked about social economic status in monetary terms, which would have given a false picture. These were used as variables for establishing any association between social-demographic variables and psychological distress. The second component measured the factors hypothesized by this study to be associated with psychological distress (HIV stage, duration on ARV, disclosure of sero-status and support network). The questions for all three components are included in the appendix I. No data was collected on other medical conditions.

34

Prevalence Of Psychological Distress And Associated Factors Among PLWAs in Mzuzu

3.7.2 Validity of data collection tool The SRQ is a brief measure of psychiatric symptoms designed by the WHO to be used across cultures (WHO, 2004). It has been validated and used in a variety of settings including Zimbabwe, Swaziland, Kenya, Sudan and South Africa and Malawi (Gueness, 1992; Hardiong, 1976; Kigamwa, 1991; & Carta, Carpiniello, Dazzan, & Reda, 2000). The SRQ is scored out of 20. A cut off point of 7/8 has shown good sensitivity and specificity in previous studies in Africa (Ibid). Recently, the SRQ was back-translated, then validated against SCID major depressive episode in mothers of infants attending for measles vaccination in Thyolo District Hospital-Malawi. At a cut-off of 7/8 the SRQ detected current major depressive episode with sensitivity 68 %, specificity 77%, and positive predictive value 33%, and any depression (current major or minor depressive episode) with sensitivity 59%, specificity 85%, and positive predictive value 64% (personal communication with Stewart et. al. 2005). This study therefore adopted this 7/8 cutoff-point because it had demonstrated good epidemiological indices above (e.g. high specificity e.t.c.). For interpretation sake in this study, the dependent variable, SRQ score was transformed or Recorded into a dichotomous variable for easy analysis. Thus, those scoring 8 or above were designated as cases (psychologically distressed) and those scoring 7 or less as non- distressed. The cut off point was chosen because it gave good indices in the validation study in Thyolo {Stewart et. al. 2005} The SRQ all 20 items reflect the concept/ symptomatology of psychological distress, thus it actually measured what it was supposed to measure {Validity of the tool} (Polit & Hungler, 1989). This tool has the highest probability of yielding similar results even if 35

used by different researchers because of the highest degree of consistency with which the SRQ measures the distress (reliability of the tool) {Polit & Hungler, 1989}. The only problem is the low sensitivity at the cut-off point. 70%+ would have been much better than the 59. The other limitation was that a formal inter-rater reliability analysis was not done in the study, however the questionnaire was highly structured.

3.8 Data Management and Analysis As mentioned above, psychological distress was the main outcome (dependent variable) while factors predicted to be associated with psychological distress (HIV staging, duration on ART, disclosure of sero-status and support network) were the explanatory (independent variables) for this study.

The collected data was coded on a computer, cleaned and analyzed using SPSS (SPSS inc, 2001) and STATA ( STATA-Corp, 2005).

The prevalence of psychological distress amongst PLWAs attending ARV clinics was calculated from the SRQ scores. Cases were defined as those scoring 8 or above on the SRQ. Total number of cases, was divided by total number of subjects to give the prevalence.

36

Prevalence Of Psychological Distress And Associated Factors Among PLWAs in Mzuzu

It was then determined which demographic and factors predicted to be significantly associated with psychological distress. The variables were categorized and/or dichotomized where necessary.

Inferential data analysis using Pearsons Chi-squared test with SPSS was used to examine the association between psychological distress and these variables. The significance of association was determined at a significance level of 0.05. To check for confounding and interactions between those factors significantly associated with psychological distress, adjusted odds ratios for each significantly associated variable was computed with STATA.

3.9 ETHICAL CONSIDERATIONS HIV/AIDS issues are very sensitive. Therefore, in studies involving PLWAs, issues of respect and confidentiality are particularly important. As described below, great care was taken to ensure that clinic attenders were treated with sensitivity, their right to refuse was made clear, and that the interviews were taken in privacy.

Permission to carry out the study was sought from the medical directors of Mzuzu Central and St. Johns hospitals (Refer Appendix VI). Ethical approval for the study was sought from the College of Medicine Research Ethics Committee (Refer Appendix VI), while written consent was sought from all participants before the interview (Refer Appendix I).

37

3.9.1 Risks to participants: There were no invasive procedures involved in the study. Since participants were asked questions about their health and feelings during the interview, psychologically they would feel uncomfortable with some questions perceived to be personal. To prevent that the participants were informed that they were at liberty to decline to answer such questions without giving reasons for their refusal. To avoid stigmatization and long waiting periods, the study was integrated within the clinic schedule.

3.9.2 Implications of the study: There was no harmful effect upon the participants in the study, other than their visit taking an additional 20-30 minutes. The only beneficial exception is that participants found with life threatening depressive disorder and suicide were referred for a psychiatric assessment and management St. John of God Mental Health Services in Mzuzu.

3.9.3 Confidentiality: All information given here was kept confidential. Names were anonymized by the use of codes on the questionnaires and have not been included in this report. Further, all interviews were carried in privacy. Consent forms and questionnaires were always locked in a cabinet, to ensure access only to the investigator. The cabinet was in the office of the investigator whose keys are only accessible by the investigator.

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Prevalence Of Psychological Distress And Associated Factors Among PLWAs in Mzuzu

3.9.4 Participation was voluntary: Participation was entirely voluntary and participants had a free choice to participate and were free to withdraw at any time from the study without giving reasons for doing so nor detriment to self nor rendered care at clinic. The study consent was obtained in writing, whereby the consent form was read to the sampled participants and they were asked to sign if they agreed before the interview took place.

3.10 DISSEMINATION OF THE RESULTS Dissemination of these research findings was done at local COMREC research dissemination conferences and may be submitted for publishing in the East and Southern Journal of psychiatry and in the Malawi medical journals. Copies of the same will also be sent to St. John of God College and College of Medicine libraries. Further, a

dissemination seminar/workshop will be conducted with health services providers and other stakeholders in Mzuzu City.

39

CHAPTER THREE: STUDY FINDINGS 4.0 INTRODUCTION: This chapter presents the findings of this study. Based on the analysis of the data collected it identifies the characteristics of the study participants, determines the associated social demographic as well as social-clinical factors for psychological distress, gives the adjusted ratios for those variables with significant relationship showing the psychological distress. The valid percentages are reported to avoid contaminating the results by the missing variables.

4.1 SAMPLE DESCRIPTION: Of the 440 PLWAs who were sampled for the study, 438 participated in the study (only two declined giving a 99.5% response rate); 397 had complete data sets, with missing data on one or two variables. However, there were no significant differences in characteristics between the 397 and the 438.

4.2 SOCIAL DEMOGRAPHIC CHARACTERISTICS OF THE PARTICIPANTS The section below describes the social and demographic characteristics of the study participants. Only valid percentages are reported to avoid effect by missing data. As mentioned above, only valid percentages are reported to avoid contaminating the results by the missing variables.

40

Prevalence Of Psychological Distress And Associated Factors Among PLWAs in Mzuzu

AGE The mean age range was the third category, which was 31-40 years. This sample had 40.4% (177 participants) in the 31-40 year category with only 2.3 % aged less than 20 years (refer Figure 1 below).

50 40 30 20 10 0 2.3 24.4

40.4 20 & below 25.6 7.3 21-30 years 31-40 years 41-50 years >50 years Fig 1: Showing age categories in percentages

Sex and Marital status The majority of participants were women 69.1 % (299). (Refer Table 1 Below). On marital status distribution, 57.8% (253) of the participants were married; while 31.3% were widowed, separated or divorced; and the remaining 5% had never been married (Refer Fig. 2).

48 115 253 22

Married

Never married

Widowed

Separated/div

Fig 2: Showing marital state of the study participants

41

Educational status On the participants level of education, 195 participants (44.5%) had attended at least primary education; 220 (50.2%), secondary; while only 10 (2.3%) had done their university education (Refer Table 1 Below). . Current occupation A large percentage of the participants were unemployed (Refer Fig. 3 below).

90

Skilled Business 11 13 Student Laborer Unemployed 0

144 174 50 100 150 200 Fig 3: Showing paticipants' Occupational distribution

Social economical state A proxy variable of social economical status (Acquisition of a brick and an iron-thatched house) showed that 56.2% of the participants (241) had a better status (Refer Table 1 Below) Table 1: Showing social demographic characteristics of respondents VARIABLE Age (Recorded) CATEGORIES <=20 years FREQUENCY 10 % 2.3

42

Prevalence Of Psychological Distress And Associated Factors Among PLWAs in Mzuzu

21-30 years 31-40 years 31-40 years >50 years Gender Male Female Marital status Married Never married Widowed Separated/divorced Education Never educated Primary Secondary University + Occupation (R) Unemployed Employed SES (R) Poor Rich

107 177 112 32 134 299 253 22 115 48 13 195 220 10 184 254 188 241

24.4 40.4 25.6 7.3 30.6 68.3 57.8 5 26.3 11 3 44.5 50.2 2.3 42.2 57.8 42.9 55

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4.3

OTHER

SOCIAL-CLINICAL

CHARACTERISTICS

OF

THE

PARTICIPANTS.

HIV staging as recorded on the clients card 303 participants (69.2%) in this study were in their third clinical stage of HIV using WHO guidelines (Refer Fig 4 below). The Characteristics of each stage are as in Appendix XIII

HIV Staging (on card).


400

300

200

Frequency

100 Std. Dev = .55 Mean = 3.0 0 1.0 2.0 3.0 4.0 N = 428.00

HIV Staging (on card).


Fig. 4: Showing the WHOs Staging characteristics of the participants

44

Prevalence Of Psychological Distress And Associated Factors Among PLWAs in Mzuzu

Duration on ARVs More than half of this sample population had been on the ARVs for more than six months (Refer Fig 5 Below).

250

243

200
165

150

100

50
27 2

0 >6months <6 months Not started

Stoped by S. effects

Fig 5: Showing Paticipants' duration on ARVs

Availability of psychological support (confidant) It was interesting to note that despite campaign against stigma and discrimination of the PLWAs (World AIDS campaign Theme for 2003-2004), 5.7% of these PLWAs had no support psychologically. Refer Fig. 6 below:

45

18.2

Spouse Parent Brother/sis/nephwe Uncle/in-law Church & other None


5.7 0 2 4 6 8 10 12 14 16 18 20 12.2 18.2

3.2

Fig 6: Showing Paticipants' sources of Psychological support (in percentages)

Support with Daily activities There was no large difference between participants who had no support with their daily activities and who had (47.9% versus 52% (Refer Table 2 Below). Disclosure of own HIV status Unlike previous trends in Malawians behaviors of not disclosing their positive status, more people in this sample (96%) had reported to disclose their sero-status to somebody (Refer table 2 below).

Attendance to an HIV/AIDS support group Only 34% of the participants had attended the HIV/AIDS support group in this subpopulation (Refer Table 2).

46

Prevalence Of Psychological Distress And Associated Factors Among PLWAs in Mzuzu

Table 2: Showing clinical characteristics of respondents VARIABLE CATEGORIES HIV staging Stage 1 Stage 2 Stage 3 Stage 4 Duration on ARV Stopped by side effects Not started <6m >6m Psychological support Parent Spouse Other/none Support for daily activities Not available Available Disclosure of own status Not disclosed Disclosed Support group Not attended Attended

COUNT 1 55 303 69 2 27 165 243 79 191 170 207 229 15 415 284 147 .2

12.6 69.2 15.8 .5 6.2 37.7 55.5 18 43.6 38.4 47.3 52.3 3.4 94.7 64.8 33.6

4.4 PREVALENCE OF PSYCHOLOGICAL DISTRESS: The prevalence rate of psychological distress in this study was 14.4%. Of the total 438 participants who had completed the SRQ in the study, 63 had scored more than the laid-

47

down cut-off point of 8. Therefore, the prevalence of psychological distress was found by dividing the 63 cases by 438 ARV clinic attenders and multiplied by 100. That is to say that 14.4% of this sub-sample had scored above the threshold of eight on the SRQ (were psychologically distressed). Using the suicidal item on SRQ, 4.5 % of the participants had suicidal feelings.

4.5 UNIVARIATE ANALYSIS: To test for the associations, univariate analysis using Chi-Squared test and Pearsons correlation were done. Following statistical tabulation of social-demographic factors and psychological distress, it was found out that the following were related as detailed on the table 3 below:

4.5.1 Social demographic characteristics of the participants associated with psychological distress: To establish association between social-demographic factors and psychological distress, some of the variables were recorded or dichotomized as appropriate. A 2 by 2 table generated by SPSS and its chi-square value were computed at significance level of =0.05. Chi-test (2 at P or =0.05) and Correlation coefficient (r) were used to

establish the association and direction of association of the variables (Refer Table 3). AGE: Age was recorded into a dichotomous variable (younger and older). Younger people were more distressed than the elderly population (r=-0.164; 2=17.89; P= 0.001). Gender: Females were more distressed than the men (r=0.103; 2 4.5=; P=0.03).

48

Prevalence Of Psychological Distress And Associated Factors Among PLWAs in Mzuzu

Marital status: There was no significant association between marital status and Psychological Distress (Refer table 3 below). Education: The less educated (those who had only attend primary or no education at all) people were more distressed than the educated population (r=-0.09; 2=17.39; P=0.001 ). Occupation: This variable was recorded into a dichotomous variable for easy analysis. The occupations were just divided into two categories on whether participant was working or not. It was then found out that the people who were not working were more distressed than the ones who had an employment of some kind (r=-0.09; 2= 20.21; P= 0.003).

Social-economical status: The poorer were more distressed than those who had a better social-economical status using a proxy question for social-economical status (r=-0.16; 2= 11.60; P= 0.001). Table 3: Showing relationship between the social-demographic variables and psychological distress. Variable Age (Recorded) Gender Categories <=30 years >30 years Male Female Married Never married Widowed Separated/div Never educated Primary %SRQ20.8 64.8 28.2 2.8 222 17 96 40 1.4 38.1 %SRQ + 8.4 5.9 11.5 57.5 31 5 19 8 1.6 6.4 2 17.88 4.5 P 0.001 0.033 r -0.16 0.103

Marital status

2.8

0.95

0.62

Education

17.39

0.001

-0.09

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Occupation (R) SES (R)

Secondary University + Unemployed Employed Poor (No) Rich (Yes)

44.1 2.1 32.6 7.1 34.5 50.8

6.2 0.2 53.0 7.3 9.3 5.4

20.21 11.60

0.003 0.001

-0.09 -0.16

4.5.2 Other clinical characteristics of the participants associated with psychological distress:

Duration on ARVs: Participants who had been on ARVs for less than six months or none at all were more distressed than those who had been getting the life prolonging drugs for more than six months (r=-0.12; 2=27.5; P= 0.000).

Availability of psychological support: Participants who had no confidant to provide psychological support, especially those without parents or spouses, were more distressed than those who had more direct psychological support (r= -0.07; 2= 17.63; P= 0.024).

The relationship between staging and psychological distress was not statistically significant. However, looking at magnitude and directional relationship by correlation coefficient, people who were in their late/advanced AIDS clinical stages were more distressed than those in their early stages (r=-0.03; 2=0.75; P= 0.86). Support for daily activities; Disclosure of own HIV sero-status; and Attendance to an HIV/ AIDS support did not show a statistical significant relationship with psychological distress (Refer Table 4 Below).

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Prevalence Of Psychological Distress And Associated Factors Among PLWAs in Mzuzu

Table 4: Showing relationship between the other clinical variables and psychological distress. Categories Stage 1 Stage 2 Stage 3 Stage 4 Stopped by side effects Not stated <6m >6m Parent Spouse None /Other Not available Available Not disclosed Disclosed Not attended Attended %SRQ0.2 10.7 61.2 14.3 0.5 3.2 33.2 49.0 13.8 39.3 46.9 39.7 46.1 2.6 83.0 56.4 29.2 %SRQ+ 0 2.1 9.6 1.9 0 3.0 4.6 6.6 4.4 4.6 91.0 7.8 6.4 0.9 13.5 9.5 4.9 2 0.75 P 0.86 r -0.03

Variable HIV staging

Duration on ARV

27.5

0.000

-0.12

Psychological support

17.6

0.02

-0.07

Support for daily activities Disclosure of own status Support group

1.57 1.88 0.002

0.21 0.169 0.96

-0.06 -0.06 -.002

4.7 LOGISTIC REGRESSION: SOCIAL-CLINICAL FACTORS ADJUSTED FOR AGE, SEX AND SOCIAL-ECONOMIC STATUS: Outcome of adjusted odds ratios (prevalence ratios in cross-sectional studies) at 95% confidence intervals, for the two significant clinical predictors (Duration on ARVs and availability of psychological support), was negligible and did not give any statistically significant interaction or confounding brought by age (old compared to younger), sex (males

51

compared to females) and social-economic status Poor compared to the rich participants) in the relationships as shown in the table below:

Table 5: Showing significant variables adjusted for age, sex and social-economical status. Variable and adjusting variable Duration on ARVs: Age Young Old Sex Male Female Social-economic-status Poor Rich Availability of psychological support: Age Young Old Sex -Male Female Social-economic-statusPoor Rich 0.6617647 0.8007391 0.6549528 1.268293 0.7391304 0.7222571 0.7610294 0.5266272 0.6213714 0.860241 0.6161616 0.775641 0.157 1.078 0.002 0.544 0.264 0.196 0.6917 0.5834 0.9622 0.4610 0.6072 0.6580 Prevalence rations 2 P> 2 value

4.8 OTHER SIGNIFICANT FINDINGS: The item on suicide on SRQ was explored further due to its significance. Taking the number of participants who indicated to have thought of ending their lives on the 17th item on SRQ, suicidality was found to be 4.3% in this study. The major predictor for suicidal ideation was sex, with females being more vulnerable to it than men (r=0.09; 2 =3.8; P=0.05).

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Prevalence Of Psychological Distress And Associated Factors Among PLWAs in Mzuzu

CHAPTER FOUR: DISCUSSIONS, STUDY RECOMMENDATIONS AND CONCLUSIONS.


5.1 INTRODUCTION:

IMPLICATIONS,

This chapter interprets and discusses the findings in the preceding chapter of the study with reference to existing knowledge; reflects on the studys implication on practice, research and education. It also considers strengths and limitations of these study findings; and finalizes with recommendations and conclusions for the study.

5.2 STATUS OF RESEARCH OBJECTIVES 5.2.1. Prevalence of psychological distress: Prevalence of psychological distress was 14.4%. This compares well, though on a lower side, with the 30% found among the mothers of malnourished children in Thyolo (Stewart et.al, 2005). The difference may be due to the cut-off point which would necessitate that future studies be carried using a cutoff-point with best indices in this population, since the former study PPV was relatively low (33%). The prevalence was however, within the reported 15-20% prevalence of similar psychiatric disorders in other studies in the west (Atkinson et al 1988; Lipsitz et al 1994; Perkins et al 1994 and Stern et al, 1992). On another note, however, this reveals the magnitude of psychological distress, which is prevalent not only in our ARV clinics but also in general Primary health care clinics, and that go undiagnosed and unmanaged. With the mental health service profile for the country and the current deficient ARV package, the PLWAs are not granted the holistic care to achieve their maximum quality of life.

53

5.2.2. Associated factors Social demographic characteristics of the participants associated with psychological distress: Following statistical tabulation of social-demographic factors and psychological distress, it was found out that the following were related as per details on the table below: This study investigated the impact demographic factors on psychological distress among the PLWAs and the following were the findings for the section: AGE: In this population, younger people were more distressed than the elderly population. This is consistent with other findings by Clesila & Roberts (2001) who found age to be negatively associated with severe emotional distress among HIV/AIDS patients. Young people may also be more distressed because of the perceived pending out come of their HIV status which would result into death or troubled future (Hay & Cuningham, 200). Further to this they may not have developed experience in handling distress in situations nor copping skills/ styles which were predictive of clinical diagnosis of major depression in one study (Olley et. al., 2004).

Gender: Females were more distressed than the men (r=0.103; 2 4.5=; P=0.033). Since it is not known about the factors that determine attendance at the hospital clinic, attendance may be determined by the ability to access the services. It is, however reported in one population based study that depression among women is usually untreated in a general clinic (Husain et. al, 2000). This may be the indication of such

54

Prevalence Of Psychological Distress And Associated Factors Among PLWAs in Mzuzu

untreated distress in our ARV clinics where patients present with this chronic and severe illness. Being an ARV clinic, the situation is not similar to that in Kenya where researchers found no gender difference in the prevalence of psychiatric morbidity in patients attending general hospital outpatient clinics (Dhadphale & Ellison, 1992, & Dhadphale et.al, 1993). They suggested that depression might in fact be more common in women than men but there is a culturally defined attitude of acceptance of discomfort and pain by women, which militates against women seeking medical treatment. The differences in health care seeking behaviors between Malawians and Kenyans may explain this difference.

Marital status: The relationship between marital state and psychological distress was not statistically significant despite the fact that participants who were either married, divorced or widowed were more distressed than the married ones. This finding may add on the gap in information since there was also no data found in reviewed literature on the relationship between marital state and psychological distress among PLWAs. However the directional relationship between the two variables would be explained by the possible distress prevalent among PLWAs who had no confidant partner as shown below. Widows and separated participants may not have anyone to share their worries with nor anyone to give encouragement unlike those who were happily married and ultimately supported socially as well as psychologically.

55

Education: The less educated people were more distressed than the educated population. This adds on the data that was found in Pakistan that depression is associated with few years of education, severe financial problems, numerous children and housing problems, (Husain et. al, 2000). This could also be explained by ability of the learned people to understand of information of encouragement that is given in clinics as well as the media that PLWAs would still live longer provided the health tips.

Occupation: The people who were not working were more distressed than the ones who had an employment of some kind as per study findings above. These findings add to the existing evidence reported by Fleming et al. (2004) & William et. al (2005) that unemployment predicts psychological distress and that fatigue and depression are associated with lack of employment among PLWAs respectively. This possibly due to the fact that working PLWAs are assured of an income that would enable them AIDS care and the ARVs. In addition, this may be fruition on the work-place AIDS policies that government is promoting in the country to alleviate the plight of PLWAs in different workplaces. Social-economical status: Studies have shown that emotional distress and poor social economic state affect peoples ability to cope with HIV infection (Grassie, Righi, Sighinolfi, Makoui, & Ghinelli, 1998) and the findings of this study suggest this is true for distressed PLWAs in our ARV clinics. These correlates with this study finding where by participants with low social economic status were more distressed than those who had a higher social-economical status. Further to the above studies, depression alone in Pakistan, where HIV was almost non-existent, was associated with severe financial and

56

Prevalence Of Psychological Distress And Associated Factors Among PLWAs in Mzuzu

housing problems, few years of education, and numerous children (Mumford et. al, 2000). These findings add on the prior evidence on the role of gender, education, sex, and social economic status in the emotion wellness among people infected by HIV/AIDS.

Other clinical characteristics associated with psychological distress and status of research hypotheses: This section discusses the status of the studys research hypotheses and findings on the relationship between the distress and social clinical factors that are reported to predict psychological distress. HIV staging: Unlike most studies in the west, and despite the fact that people who were in their late/advanced AIDS clinical stages were more distressed than those in their early stages this directional relationship, this was not statistically significant. In this case we rejected the alternative hypothesis for this study. This could explained by the fact that the staging that were captured during this study were not the recent clinical staging but the one the PLWAs got when they initially given the diagnosis (staging) and/or being referred for the ART. Further, this may explain the differences between these study findings and those in reported by other studies where staging and CD-4 count was associated with emotional distress (Maj, 1997 & Clesila & Roberts, 2001). For some participants in this study, some significant improvements had already occurred and this could mask the AIDS impact on their psychological wellness, since they had improved from the time of first diagnosis to the time of data collection.

57

Duration on ARVs: As shown above, there was no significant difference between participants who had been on ARVs for less than six and those who had been getting the life prolonging drugs for more than six months. In this situation we failed to reject the null hypothesis and reject the alternative hypothesis for this study. The finding may be as a result of elevated anxiety and distress that is reported to have increase with the HIV diagnosis and onset of HIV related symptoms respectively (Brown et. Al, 1992 & Kelly et. Al., 1993). With advent of ARVs and as individuals take the ARVs with time, they tend to get more hope and the distress levels go down. This is also in consistence with reports by Burack, Barret & Stall (1993) who reported the relationship between HIV disease staging among HIV positive gay men over a 5.5-year follow-up.

Availability of psychological support: The findings of this study also suggest that PLWAs with a confidant do experience more of this buffer as the participants who had no confidant to provide psychological support, especially those without spouses, were more distressed than those who had more direct psychological support. With this statistically significant relationship we rejected the null hypothesis and accepted the alternative hypothesis for this study. Other studies also suggest that psychosocial support can buffer the effects of psychosocial and physical stress on individuals (Broadhead et al., 1983; Cohen & Wills, 1985). Further to that, understanding that parents and spouses were giving support to their relatives living with the virus extend our understanding of other people in need of information about prevention of depression by support PLWAs psychologically like church groups and other service providers. Further to this, several studies show that lack

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Prevalence Of Psychological Distress And Associated Factors Among PLWAs in Mzuzu

of social support particularly from the spouse or partner is a well-established predictor for mental health problems, especially when levels of stressful life events are high (Cutrona, 1984; & Paykel, Emms, Fletcher, & Rassaby, 1990). This is reported in the west, where most research on the prevalence of psychological distress among HIV+ individuals has been done,. Support for daily activities: On this factor (variable), we failed to reject the null hypothesis for rejection of the alternative hypothesis for this study. This is against other study findings that found that HIV/AIDS was accompanied by substantial impairment in role as well as physical functioning (OKeefe & Wood, 1996). It would be expected that support to PLWAs with their daily activities would alleviate the levels of their distress as was found by Watchtel et. al, 1992). This finding could either be explained by the discontentment that the PLWAs had from the support they get from the people they expect to get the support from. On the other hand this may be a manifestation of the lack of support for these people, which could be as result of prevalent stigma, and discrimination that may be residual in our societies against the PLWAs.

Disclosure of sero-status and attendance to a support group: The other surprising finding was when it was found out that there was no statistically significant difference between participants who did not disclose their sero-status nor indicated to have attended any HIV/AIDS support groups were more distressed than those who had. For these two variables we also failed to reject the null hypothesis and therefore rejected the last two alternative hypotheses for this study.

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As said above, this may be attributed to anxiety that PLWAs may have in disclosing their status let alone attend an AIDS support group for fear of being stigmatized and at last discriminated against in the communities. It may also be due to the PLWAs ambivalent opinions or due to novel beliefs they may have over the benefit of the disclosure or the support group. 5.3 LOGISTIC REGRESSION: SOCIAL-CLINICAL FACTORS ADJUSTED FOR AGE, SEX AND SOCIAL-ECONOMIC STATUS: Outcome of adjusted odds ratios (prevalence ration in cross-sectional studies) at 95% confidence intervals did not give any statistically significant interaction or confounding brought by age, sex and social-economic status in the relationships as shown in the table below:

5.4 POSSIBLE LIMITATIONS OF THIS STUDY:

The main limitations of the study are: a) Generalisability: the findings of this study may not be generalisable to other settings as it is only focused in Mzuzu, which is in the northern region of Malawi. Further this is a specific group of people with a chronic illness (AIDS) and getting ARVs.

b)

Causation: It would be very difficult to determine the causal inference on whether HIV/AIDS preceded the psychological distress as the data was collected at one point in time. This is because the study was a cross-sectional one, and not a longitudinal study.

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Prevalence Of Psychological Distress And Associated Factors Among PLWAs in Mzuzu

c)

Validity of the measurement tool: The study tool does not measure specific mental disorders but symptoms of psychiatric morbidity; hence the prevalence herein does not specify the prevalence of a specific mental disorder. Further SRQ does not discriminate against other causes of distress and other mental disorders, however it was used since it the only validated and convenient tool for estimating mental health problems in Malawi.

d)

The other limitation was that a formal inter-rater reliability analysis was not done in the study. This could have been done, however the questionnaire was highly structured.

5.5 IMPLICATIONS AND RECOMMENDATION: With information in the study findings and discussion above, several implications and recommendation for service providers and policy makers in Malawi and other developing countries are presented in his section as follows:

(A) Implications for Health practice and education First, a successful HIV/AIDS intervention program must include the assessment of mental disorders and their appropriate management as part of the normative service for PLWAs. There is a need to develop appropriate materials and models for the delivery of

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mental healthcare within the parameters of the 3 by 5 initiative based on the principles of affordability, acceptability and availability. The frontline AIDS care providers should be the existing primary healthcare workers and counselors who have been given additional in-service training in mental health and relevant materials although caution is needed so that too many functions are not expected of the same individuals. If this worsens then enhancing referral measures for patients with mental health problems would improve the situation. Additional skilled personnel may be essential in certain situations.

Secondly, it is clear that the same problems concerning the detection and treatment of mental disorders among the physically ill occur in Malawi, as is the case in the West. It is very likely that the psychological disorders that accompany physical illness are not very uncommon in our society. They ultimately increase the degree of impairment of daily function especially among the PLWAs (Wells et. al, 1989) and this may have serious consequences if it results in a decline in family income and consequent lack of provision for the rest of the family. The treatment of such problems should therefore be regarded as a very important aspect of HIV care (Patel, 2003).

Thirdly, whenever possible, an established relationship with local mental health service providers should be encouraged, to promote a collaborative model of care that includes supportive supervision and the in-service training, in mental health care, for the AIDS care workers as well as clearly defined referral pathways to specialist mental health

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Prevalence Of Psychological Distress And Associated Factors Among PLWAs in Mzuzu

services (Freeman, 2005). This would promote integration of mental health in AIDS programs that help to advance quality of life among the PLWAs.

Fourthly, it appears that the PLWAs who have HIV have numerous psychological symptoms as well as somatic ones and they would be given a comprehensive care considerably if they had their mental status examination done promptly and treated for the underlying mental health problem (OMalley et. al, 1999). This could be considered on top of the ARVs to ensure a comprehensive management of their co-occurring health problems.

Lastly, the rate of probable depressive disorder among the women ARV treatment in our sample was not markedly raised as it was with men but the level of depression generally among women is high. This means that satisfactory assessment and treatment of depressive disorders in women is needed at a primary care level or, possibly in the general population as there may be cultural reasons why they do not present for treatment. Such treatment is very important if we are to address the burden of depressive disorder in the developing world (WHO, 1996).

(B) Implications for Research:

This study only investigated the relationship between psychological distress and HIV among participants aged 18 and above for ethical reasons. Further to this limitation in focusing on general population most reported data shows that depressive symptoms are

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associated with increased mortality in HIV- older women (Ickovics et. al., 2001) and influence disease progression among HIV- men (Leserman et. al., 2002). This situation highlights the need for more such controlled studies among other age groups. Future studies should consider exploring other groups at increased risk, such as adolescents and children (Evans et al 2002),

The third implication is the need to support research on mental health and HIV/AIDS. Since over 90% of the burden of HIV/AIDS is in developing countries, and that little research in this area emerges from these countries (Freeman, 2005), it is recommended that the immediate priorities for research must be linked to the new treatment programs for PLWAs. There is therefore need to conduct larger studies to look at the prevalence of specific mental disorders not only among the PLWAs but also in the general population. Future studies should also establish effect and/or presence of the psychological distress at a time when one is given a positive sero-status in our VCT centers. This study did not explore this very important variable.

(C) Implications for policy: Advocacy is needed from a range of stakeholders to highlight the role of mental health in HIV/AIDS treatment programs. Sadly, our HIV/AIDS policy hardly highlights the need for such mental health perspectives in the HIV programs that are being rolled out in rural areas (MOH, 2003). There is need for the government to put in place measures for providing in-service training on mental health to its workers involved in HIV/AIDS care.

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Prevalence Of Psychological Distress And Associated Factors Among PLWAs in Mzuzu

Implementation of AIDS treatment programs must also include effective alleviation of psychiatric symptoms and promote the emotional well-being of people living with HIV/AIDS (Freeman, 2005). Moreover, people accessing HIV/AIDS services must be given opportunity to access mental health services. Enhancing referrals to mental health facilities can help in situations where these mental health services are not prioritized by agencies implementing AIDS treatment programs.

(D) Recommendations: From the above discussion it is evident that: i) Health care providers and policy makers should be sensitive to the fact that people who are infected with HIV do experience a variety of other psychological problems as well as increased depression and fatigue. However, these debilitating issues may not be addressed by physical drugs but more appropriately through therapies that are also non-biological. In the health care setting, this may require additional psychosocial support and programming, as well as interventions aimed at reducing fatigue and depression (such as relaxation exercise, group as well as individual counseling, perhaps anti-depressive medications, and so on). ii) The study data suggest that improving patients socio-economic status may also result in improved quality of life. This adds to the need for economically empowering needy PLWAs (Braitstein et. al. 2005) iii) The study findings further affirm the importance of recognizing and treating psychological disorders in PLWAs, to improve their quality of life. Given that a good percentage of PLWAs use ARV clinics and most PLWAs are distressed, the

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findings (an underestimate of the true prevalence of depression) support a greater ARV providers role in treating psychological distress among PLWAs. Studies indicate depression alone diminishes HIV/AIDS treatment effectiveness partly by reducing the ability of the PLWAs to stay on their medication (DiMatteo, Lepper, & Croghan, 2000). This study enlightens the providers that the PLWAs require improved monitoring antiretroviral medication. There is also an urgent need for strengthening referral of patients to specialized facilities and enhancing in-service training for AIDS care providers in mental health. iv) With increased training and support from experienced mental health professionals, ARV clinics staff and community volunteers could more effectively recognize psychological distress and other mental health problems, link PLWAs with HIV clinics offering appropriate medication, help PLWAs stay on prescribed medication, and support and counsel PLWAs taking both medication.

5.6 CONCLUSIONS: Psychological disorders, especially depression, continue to be the most observed psychiatric diagnoses among HIV infected individuals and warrant thorough assessment and treatment. Prevalence of psychological distress also seems elevated, especially in young females; those with low education and poor social economical status; the jobless; new starters of ARVs; and those without psychological support. Additional large-scale studies are needed to determine the exact prevalence rates of other mental disorders during HIV disease. Lastly, deliberate policy is also needed to enhance mental health services provision among PLWAs on ART.

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45. Moore, Schuman, P, Cshoenbaum, E. et al. (1999). Severe adverse life events and depressive symptoms among women with or at risk for HIV infection in four cities in the United States of America. AIDS; 13: 2459-68 46. Mumford DB, Minhas FA, Akhtar I, et al. (2000). Stress and psychiatric disorder in urban Rawalpindi. Br J Psychiatry; 177: 55762. 47. Mumford D.B, Nazire M, Jilani F, Baig I.Y. (1996). Stress and psychiatric disorder in the Hindu Kush; Br J Psychiatry; 168: 299 307. 48. Mumford DB, Saeed K, Ahmad I, et al. (1997). Stress and psychiatric disorder in rural Punjab. A community survey. Br J Psychiatry; 170:4738. 49. Nimnuan C, Hotopf M, Wessely S. (2001). Medically unexplained symptoms. An epidemiological study in seven specialties. J Psychosom Res; 51: 3617. 50. NSO (Malawi), and ORC Macro (2005) Malawi Demographic and Health Survey 2004. Calverton, Marlyland : NSO and Macro. 51. OHara MW, Neunaber DJ, Zekoski EM. (1984). A prospective study of postpartum depression: Prevalence, course, and predictive factors. J Abnorm Psychol; 93:158 171. 52. OKelly E.A & Wood. (1996) The impact of HIV infection on quality of life in a multiracial South-African population. Quality of life Res. 5:275-280. 53. OMalley PG, Jackson JL, Sanoro J, et al. (1999). Antidepressant therapy for unexplained symptoms and symptoms syndromes. J Fam Pract; 48: 980 90. 54. Olley, B.O., Seedat, S., Nei, & Stein, D.J. (2004). Predictors of Major Depression in Recently Diagnosed Patients with HIV/AIDS in South Africa; AIDS Patient Care and STDs. Vol. 18, No. 8.

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Appendix
I QUESTIONNAIRE/ CONSENT FORM (ENGLISH) Welcome to the study. You have expressed an interest in participating in this study. Before we start I would like you to know the following: Purpose of the Study: We are a team of health workers from St John of God Mental Health service, Mzuzu, and we are conducting a study of the thoughts and feelings experienced by people with HIV/AIDS. We hope to use the results of the study to improve services for people living with HIV/AIDS. Procedures: If you consent, you will be asked some questions about your thoughts and feelings as well as your home life. This will take about 20 minutes. Risks and benefits: We do not provide any healthcare to you and refusal to take part in the study will not affect the treatment you receive in any way. You may feel uncomfortable answering questions perceived to be personal; you are at liberty to decline to answer such questions without giving your reasons. It has, however, to be noted that the information given would help in coming up with recommendations for improving psychological care for PLWAs. If we are particularly concerned about your health we may offer you referral to the appropriate services. Confidentiality: All information given here was kept confidential and only used for research purposes. Your name will not appear in any report of the research. Participation is voluntary: Participation is entirely voluntary and you have the choice to participate or withdraw at any time from the study without giving your reasons for doing so nor detriment to yourself nor affecting care the rendered at this clinic. 75

If you have any questions please do not hesitate to contact the team leader as follows: Charles Masulani Mwale, St John of God, Box 744, Mzuzu. Tel: 01332690/495 Cel: 09927938/09329787, E-Mail:cgmasulani@yahoo.com. CONSENT STATEMENT: ..has explained to me the nature and procedures involved in this study above and I agree to participate voluntarily. Signature of participant.Date.

Signature of InterviewerDate.

Section A. Social-Demographic Characteristics How old are you? .. Years Are you: 1 = Male or 2 = Female? What is your current marital status? 1. = Married 2. = Never married

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3. = Widowed 4. = Separated/divorced What is the highest level of education you have completed? 1 = Never educated 2 = Primary 3 = Secondary 4 = University above What is your current occupation? 1 = Laborer 2 = Clerk 3 = Skilled work 4 = Business 5 = Student 6 = Unemployed

What type of house do you come from? (Proxy for social economic status). 1 = Made of poles and grass 2 = Made of unburned bricks 3 = Made of burnt bricks and mud 4 = Made of bunt bricks and cement

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Section B. Other modifiable factors HIV staging (To be obtained from clients ARV card which is classified already by clinical officers trained ARV therapy using the WHO ARV guidelines) 1 = Stage I 2 = Stage II 3 = Stage III 4 = Stage IV How long have you been on these ARVs Not yet started/ Booked < 6 months > 6 months Forced to discontinue because of side effects

Support network What are your sources of confidant psychological support? (Tick all that apply!) Sources Parents Spouse Brother/Sister Nephew/Niece Aunt/ Uncle

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Parents in law Church friends Other friends (Specify)

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Section C. Self Reporting Questionnaire (SRQ) WHO/MNH/PSF/94.8 1. Do you often have headaches? 2. Is your appetite poor? 3. Do you sleep badly? 4. Are you easily frightened? 5. Do your hands shake? 6. Do you feel nervous tense or worried? 7. Is your digestion poor? 8. Do you have trouble thinking clearly? 9. Do you feel unhappy? 10. Do you cry more than usual? 11. Do you find it difficult to enjoy your daily activities? 12. Do you find it difficult to make decisions? 13. Is your daily work suffering? 14. Are you unable to play a useful part in life? 15. Have you lost interest in things? 16. Do you feel that you are a worthless person? 17. Has the thought of ending your life been on your mind? 18. Do you feel tired all the time? yes/no yes/no yes/no yes/no yes/no yes/no yes/no yes/no yes/no yes/no yes/no yes/no yes/no yes/no yes/no yes/no yes/no yes/no

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19. Do you have uncomfortable feelings in your stomach? 20. Are you easily tired?

yes/no yes/no

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I (B) CONSENT FORM/QUESTIONNAIRE (TUMBUKA/CHICHEWA) Muli wakupokerereka ku kafukufuku uyu. Mwalongola mphampho pakutololapo chigawa pa kafukufuku uyu. Pambere tindayambe, mukwenerakumanya ivi: Mutu wa kafukufuku: Tafuma ku St. John of God kuzakachita kufukufuku wakumanya maghanoghano ya awo bakupokera mankwala ghakuchepeskako unandi wa kachibungu ako kakwizitsa matenda gha Edzi. Tinachigomezgo kuti ivyo tisange mukafukufuku uyu, vitovwirenge ppakupwerelera wanthu awo wana kachibungu aka. Nthowa na ndondomeko zake: Para mwazomera kutololapo chigawa pa kafukufuku uyu mufumbikenge mafumbo gha kukwaskana na umoyo winu na maghanoghano ghinu. Ivyi vititorenge mphindi khumi. Uwemi na uheni wa kafukufuku: Tikupereka wowviri uli wose chara, ntheuna palije sugzo lakukwaskana na wowviri wamukhwala pakukana pakutololapo chigawa pa kafukufuku uyu. Kweneso, muli bakumasuka kuti mungazgola yayi mamafumbo agho mukuwona kuti ghakumukwasani imwe nga munthu pamwekha kwambula kulongosola vifukwa vyake. Kweninso, ntchakuzirwa kumanya kuti ivyo vasangikenge pa kafufuku uyu vizamovwira chomene pakulimbikiska wanthu awo wakukhal na kachibungu aka ka HIV. Para tasanga sugzo likulu paimwe, tingamutumani kukapokera wowviri unyake kuwatebeti wakwenelera. Chinsisi: Vyose ivyo muzgolenge visungikenge mukafukufuku pera. Mazina yalembekenge yayi pa lipoti. mwachisisi, nakugwirisika

Palije nchichizgo pa kafukufuku uyu: Palije kuchichigza pa kafukufuku uyu. Mungasankha kuchita nawo, kweniso kulekeza kwambulakupereka vifukwa vyake. Para mungawa na fumbo mungafumba mwenecho wa kafukufuku uyu mwantheura: Charles Masulani Mwale, St John of God, Box 744, MZUZU. Tel: 01332690/495 Cel: 09927938/09329787, E-Mail:cgmasulani@yahoo.com. Consent statement: ..wanipahirila kawiro na ndonomeko ya kafukufuku uyu ndipo nkhuzomera kutololapo chigawa pa kafukufukuyu mwambula kuchichizgika. Signature of participant.Zuwa. Signature of InterviewerZuwa.

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SECTION A. SOCIAL-DEMOGRAPHIC CHARACTERISTICS 1) Muna vyaka vilinga? 1. = <20 2. = 21-25 years 3. = 26-34 years 4. = 35-50 years 5. = > 50 years 2) Ndimwe: 3) 1= Wanalume panyake 2= Wanakazi Ndondomeko ya banja linu ili uli? 1. Pabanja 2. Wambula kutolapo/ kutengwapo 3. Chokolo/chiwuya Kasi masambilo ghinu muli kupfika mphani? 0. Nindasambilepo yayi 1. Pulayimare 2. Sekondale 3. Univesite kulutira munthazi Mukuchitachi panyengo ya sono 0. Palije 1. wapasukulu 2. kugwira maganyu 3. kalembela 4. kuguliska malonda 5. mumisili Kasi nyumba yinu yiri na malata na njelwa zakotcha? 0 = Yayi 1 = Enya HIV staging (To be obtained from clients ARV card which is classified already by clinical officers trained ARV therapy using the WHO ARV guidelines) = Stage I = Stage II = Stage III = Stage IV

4)

5)

6) 7)

1. 2. 3. 4.

8) Mwamwa/Mwagwirisa ntchoto ma ARVs nyengo itali uli? 1. =Nindayamebe/ Wandanipe zuwa 2. =Miyezi 6 yindakwane 3. = Miyezi 6 yajumphapo 4. =Kuchichizika kuleka chifukwa chavyakuchitika para mankwhala ghamweka.

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9) Wovwiri Kasi awo wakumovwirani mumaghanoghano mbanjani? (Tick all that apply!) 1. 2. 3. 4. 5. 6. 7. 8. Wapapi Wawoli panji wafumu wane Mlongosi panji mudumbu wane Muphwa/musengezgana wane Ankhazi panji asibweni Wapongozi wane Awo nikupemphera nawo Wanyake (Longosolani)

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9 (b) Kasi muna wanji awo wakumuvwirani na ntchito za mazuwa yose? 0. = Yayi 1. = Enya 10) Kasi muli kuphalirapo wanji zakuti muna kachibungu ka HIV? 0. = No 1. = Yes 11) Kasi muli kuwapo pa wupu wuliwose wa za kukhwasana na za kachibungu ka HIV? 0 = Yayi 1 = Enya 12) Total SRQ Score. . 13) SRQ Positive (>8) /Negative (<8). 0 = Negative 1 = Positive SRQ (Chichewa version) SQR Kodi mumamva mutu kupweteka pafupipafupi? Kodi chilakolako chanu pa zakudya sichiri bwino? Kodi mumavutika kugona usiku? Kodi mumachita mantha ndi zinthu zazingono? Kodi mumapanga manjenje a manja? Kodi mumakhala ndi mantha kapena wodandaula? Kodi mumadzimbidwa? Kodi mumakhala ndi vuto kuti muganize bwino? Kodi mumakhala osasangalala? Kodi mumalira moposa muyeso? Kodi mumakhala ndi vuto pogwira ntchito zanu za tsiku ndi tsiku? Kodi mumachiona chobvuta kumanga mfundo? Kodi ntchito zanu za tsiku ndi tsiku zikuyenda? Kodi mukulephera kukwaniritsa udindo wanu pamoyo wanu? 85

Eya

Ayi

Kodi mwataya chidwi mu zinthu zochitika? Kodi mumadziona kuti ndinu munthu wosafunikira? Kodi munaganizapo zofuna kuchotsa moyo wanu? Kodi nthawi zonse mumakhala otopa? Kodi muli ndi vuto liri lonse ndi mmimba? Kodi simumachedwa kutopa?

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II STUDY PERSONEL: The research project used the following: Table 6: Showing the personnel involved in the study Title Main investigator Task Preparation, & write-up. Supervisor Co- Supervisor No. 1 Co-Supervisor No. 2 Translators Academic supervision Technical supervision Technical supervision Translation process Dr. Don Mathanga Dr. R. Stewart Dr. F. Kauye Mr Kaira & Mr. Nyoni Mrs Makwakwa Mrs. Chaula Mrs. Josia Research assistant Nurses St. Consenting & data collection 1st interview Mrs. Chimarilo Mrs. Ngambi Identified person organizing, Charles Masulani Mwale

Research assistant Nurses Mzuzu Consenting & data Central Hospital collection

Johns Hospital

III BUDGETARY ESTIMATES AND JUSTIFICATION Table 7: Showing the study budget Items Reams of paper Floppy diskettes Binding costs Quantity 4 1 box Cost per item in MK 400 750 Total cost/ covered. K1600 K750 College of Medicine

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Transport for -Investigator -Research assistants Allowances for: -Research assistants Training Translation COMREC submission Dissemination Secretarial work Internet access Total K2000 St. John of God St. John of God K 59, 850 approval M700 x 20 days K14000 x 3 K3000 K2000 College of Medicine Fuel: 30 liters 2 trips x 20 days 130 40 K6500 K2000

The total given above was arrived at after costing the activities and items included in this proposal. This excluded COMREC approval fee and binding fees, stationery, Internet costs and secretarial work, which were covered by the college of Medicine and St. John of God respectively. This cost was so minimized because the investigators employer a mission hospital shouldered it, and that there were no external funding for the study.

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V. GANNTS CHART SHOWING THE RESEARCH PERIOD. Table 8: Showing the study Grants Chart. Activity Conceptualizing Literature review Draft proposal submission to post graduate committee Final proposal write up Initial translation Submission to COMREC Training Data collection Data analysis Report writing Final submission Presentation Dissemination Apr5 May5 Jun5 Oct5 Nov5 Dec5 Jan6 Feb6 Nov6

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APPROVAL LETTER FROM POST GRADUATE COMMITTEE


MPH dissertation proposal Date: Tue, 11 Oct 2005 14:53:02 +0200 From: "Ms Regina Chikuse" <rchikuse@medcol.mw> To: "Charles Masulani" <cgmasulani@yahoo.co.uk> CC: "Don P. Mathanga" <dmathang@mac.medcol.mw> Below are comments from postgraduate committee PSYCHOLOGICAL IMPACT OF HIV/AIDS AMONG PLWAS IN MZUZU: Student Name: Charles Masulani Mwale Academic Supervisors: Dr Don Mathanga Comments: Consider incorporating Dr Stewart or Dr Felix Kauye as supervisors What scoring system will be used Committee advises consultation with Dr Kauye and Dr Stewart for review of the proposal before submission to COMREC Proposal passed. Submission to COMREC required. Please arrange to meet with your academic supervisor. ____________________________________________ Regina Loti (Mrs) Administrative Assistant Masters of Public Health Community Health Department College of Medicine P/Bag 360, Chichiri, Blantyre 3 Tel: 08 202 055/01 671 911 Email: rchikuse@medcol.mw; reginaloti@gmail.com

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ETHICAL CLEARANCE LETTERS. VI (a) Clearance letter to COMREC

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VI (b) Approval letter from COMREC

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VII. CLEARANCE LETTERS. VII (A) Clearance letter from Researchers institution .

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VII (b) Clearance letter to Mzuzu Central Hospital .

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VII (c) Approval letter From Mzuzu Central Hospital.

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VII (d) Clearance letter to St. Johns Hospital.

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VII (e) Approval letter from St. Johns Hospital.

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VIII. WHO CLINICAL STAGING OF HIV/AIDS AND HIV/AIDS Clinical stage 1


Asymptomatic Persistent generalized lymphadenopathy (PGL)

Clinical stage 2
Moderate unexplained weight loss (<10% of presumed or measured body weight) Recurrent respiratory tract infections (RTIs, sinusitis, bronchitis, otitis media, pharyngitis) Herpes zoster Angular cheilitis

Clinical stage 3
Conditions where a presumptive diagnosis can be made on the basis of clinical: Signs or simple investigations Severe weight loss (>10% of presumed or measured body weight) Unexplained chronic diarrhoea for longer than one month Unexplained persistent fever (intermittent or constant for longer than one month) Oral candidiasis Conditions where confirmatory diagnostic testing is necessary Unexplained anaemia (< 8 g/dl), and or neutropenia (<500/mm3) and or thrombocytopenia (<50 000/ mm3) for more than one month

Clinical stage 4
Conditions where a presumptive diagnosis can be made on the basis of clinical signs or simple investigations HIV wasting syndrome Pneumocystis pneumonia Recurrent severe or radiological bacterial pneumonia Chronic herpes simplex infection (orolabial, genital or anorectal of more than one months duration) Oesophageal candidiasis Conditions where confirmatory diagnostic testing is necessary: Extrapulmonary cryptococcosis including meningitis Disseminated non-tuberculous mycobacteria infection Progressive multifocal leukoencephalopathy (PML) Candida of trachea, bronchi or lungs Cryptosporidiosis Isosporiasis Visceral herpes simplex infection Cytomegalovirus (CMV) infection (retinitis or of an organ other than liver, spleen or lymph nodes) Any disseminated mycosis (e.g. histoplasmosis, coccidiomycosis, penicilliosis) Recurrent non-typhoidal salmonella septicaemia Lymphoma (cerebral or B cell non-Hodgkin) Invasive cervical carcinoma Visceral leishmaniasis

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