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The Impact of HIV/AIDS on the East African Family
and the IncreaSIng Need for Formal Orphan Care

presented by

Kimberly A. Lay

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6/01 c:/CIRC/DateDue.p65.p.15

THE IMPACT OF HIV/AIDS ON THE EAST AFRICAN FAMILY
AND THE INCREASING NEED FOR FORMAL ORPHAN CARE

By

Kimberly Ann Lay

AN ABSTRACT OF A THESIS
Submitted to
Michigan State University
in partial fulfillment of the requirements
for the degree of
MASTER OF ARTS
Department of Anthropology
2001

Professor Anne Ferguson

ABSTRACT

THE IMPACT OF HIV/AIDS ON THE EAST AFRICAN FAMILY
AND THE INCREASING NEED FOR FORMAL ORPHAN CARE

By

Kimberly Ann Lay

This thesis examines the impact of HIV/AIDS on the East African family.
The case of Tanzania is specifically explored in a contextual manner through the
review of literature. Tanzania is one of the poorest countries in Africa and it has
one of the highest rates of HIV/AIDS infection. The family in Tanzania has
traditionally cared for ill members and orphaned children. However, it is difficult
for families to continue their caregiving responsibilities in areas in which a high
number of young adults are dying as a result of HIV/AIDS. Adolescents and the
elderly are likely to become responsible for supplying social and financial support
for family members that remain. In East Africa the burden of caring for HIV/AIDS
infected individuals and orphaned children becomes the responsibility of women.
Women may be HIV/AIDS infected and in need of care themselves.

Feminist theory and family stress theory are utilized in this thesis. It is not
only important to examine the ways in which the family in Tanzania copes with
the stress of HIV/AIDS, but also to examine the ways in which women manage
the stress and strain of their roles, and to ask how long they can continue to be
overburdened with their caregiving responsibilities. Recommendations are

offered for further research and program development.

To my parents, Patricia C. and James R. Lay

ACKNOWLEDGMENTS

I would like to gratefully acknowledge and thank the members of my
graduate committee, Dr. Anne Ferguson, Dr. Jacob Climo, and Dr. Harriette
McAdoo for their continuous guidance and support. I would also like to express

my appreciation to family and friends for their encouragement and support.

TABLE OF CONTENTS

INTRODUCTION ............................................................................... 1
CHAPTER 1
AN INTRODUCTION TO THE PROBLEM FACING AFRICA .......................... 9
Why Africa? ............................................................................................ .9
Familial Perspective ............................................................................... 12
HIV/AIDS: Just Another African Crisis?. .14
Orphans: An Underestimated Consequence ....................................... 22
CHAPTER 2
CONTEXTUAL SETTING AND FAMILY STRUCTURE .................................... 25
Tanzania” .. ... ..26
Contextualizing the Family ................................................................... .34
Importance of the Extended Family .............................................. 39
Gender Based Care Issues ........................................................ 41
CHAPTER 3
THE RISING NEED FOR FORMAL ORPHAN CARE MODELS ...................... 46
AIDS Orphans ....................................................................................... 47
What Happens When a Generation Dies? ............................................. 48
Who is Responsible? ............................................................................. 52
Women's Work ....................................................................................... 59
CHAPTER 4
CONCLUSION: WHERE DO WE GO FROM HERE? .............................. 62
Filling in the Gaps: Research and Programming ................................... 63
BIBLIOGRAPHY ............................................................................................... . 77

INTRODUCTION

HIV/AIDS has spread rapidly in impoverished communities which depend
on human labor for survival and where the levels of poverty are so great that
resources for dealing with the care of the sick, dying, and orphaned are already
extremely scarce. The countries of Sub-Saharan Africa have the highest rates of
HIV/AIDS infection and death in the world (FAO 2000).

As HIV/AIDS infected adults fall ill and die, families face declining
productivity, a rise in household expenditures for medical bills and funeral
expenses, a loss of productive family members, and growth in the number of
dependents. The HIV/AIDS epidemic poses tremendous challenges for families,
communities, governments, non-governmental organizations, and the
international community. HIV/AIDS is not just a medical problem, it is a social
problem as well (FAO 2000).

The list below illustrates some startling facts about the HIV/AIDS

epidemic.

0 Eleven people worldwide are HIV infected every minute; 10 live in sub-
Saharan Africa.

0 By the close of 1999:

900,000 adults and children were living with HIV/AIDS in North America,

1.3 million in Latin America,

5.6 million in South and South-East Asia,

24.5 million in Sub-Saharan Africa.

In 1999, eight percent of the population of Tanzania was HIV infected.

95% of all AIDS orphans live in Africa.

In Africa, war and famine caused an orphan rate of 2%; AIDS pushed the rate
to 12% in some countries.

. By the year 2010 Tanzania will have 4.2 million orphans who will have lost
their parents because of AIDS. This means that every third child in Tanzania
will be an orphan.

(UNAIDS cited by Health Canada 2000).

This thesis will examine three overarching questions: 1) In what ways is
the family in Tanzania affected by HIV/AIDS? 2) How does the family and the
community cope with and manage during the AIDS crisis? 3) What related
research and program areas need attention? HIV/AIDS presents a risk to the
entire family unit. The family may not be familiar with nor prepared for the unique
set of circumstances that HIV/AIDS brings. The family, nuclear and extended,
may be infected by or affected by the disease in the form of illness or in the form
of caring for the infected and/or orphaned. Women are often affected by
HIV/AIDS as both caregivers and as needers of care. It is on women, within the
family and the community, that the burden of care for iII family members and
orphaned children falls (Campbell 1999).

Family coping patterns for managing circumstances induced by HIV/AIDS
are likely to lead to family restructuring and role adaptation. The largest number
of AIDS related deaths occur between the ages of 15 and 49. These years are
usually the productive and child bearing years. It is common for adolescents and
the elderly to become responsible for supplying social and financial support for
those remaining (Hooyman and Gonyea 1995).

In this thesis I argue that in addition to examining the ways in which the
family as a unit is being restructured due to the AIDS epidemic, it is important to
look at the position of women as caregivers within the family and community.
Women and men are differentially affected by HIV/AIDS, have unequal access to
resources, and employ different coping strategies. It is essential to question in
what ways does a household cope in the face of insecurity while taking into
account gender inequalities. Specifically, we must consider in what ways the
caregiving role of women has changed or increased during the AIDS epidemic,

and if and how are women able to adequately carry out their responsibilities.

Theoretical Framework

Two theoretical frameworks were implemented in this thesis: feminist
theory with a focus on the gender and development (GAD) perspective and
family stress theory.
Feminist Theory

The ways in which family structure is affected by HIV/AIDS can be
examined by utilizing feminist theory. In this thesis feminist theory is used to
recognize and explore the position and responsibility of women in the context of
Tanzania during the time of the HIV/AIDS crisis. Additionally, the broader social
circumstances contributing to Tanzanian women's experiences of HIV/AIDS is
examined and suggestions for transformation of these circumstances are offered.

GAD, a feminist development theory, “addresses the root inequalities (of
both gender and class) that create many of the practical problems women
experience in their daily lives” (Connelly et al. 2000). GAD focuses on both the
practical needs and the strategic interests of women and takes a gender-
sensitive approach rather than a woman-only approach (Parpart 1995).
Addressing practical needs involves improvement of the immediate condition of
women’s lives. Whereas, addressing strategic interests involve long-term
transformations in the societal position of women, and involve empowering
women to be active agents in such transformations (Connelly et al. 2000).
Rathgeber (1990) states GAD “sees women as agents of change rather than

merely as recipients of development assistance, and stresses the need for

women to organize themselves for effective political voice” (cited by Rathgeber
1 995).

Parpart (1995) asserts that GAD is situated within socialist feminist
scholarship. Socialist feminists argue that “we should begin the analysis of
subordination with the experience of women” (Connelly et al. 2000). Socialist
feminism incorporates the social construction of gender into its analysis and

views the concept of patriarchy from a historical standpoint. Furthermore,
socialist feminists are concerned with “the relationship between reproduction and
production and the capitalist male-dominated structure of both” (Connelly et al.
2000)

GAD focuses on the social construction of gender roles and gender
relations. Gender is viewed as “the process by which individuals who are born
into biological categories of male or female become the social categories of men
and women through the acquisition of locally-defined attributes of masculinity and
femininity‘ (Kabeer 1991 cited by Parpart and Marchand 1995). Viewing gender
from this perspective allows for the possibility of transforming gender roles and
reveals “the gendered division of labor and power” as a social construction
(Parpart and Marchand 1995).

The GAD approach takes a postmodern feminist perspective in valuing
local knowledge and in acknowledging that the lives and experiences of women
are heterogeneous. Women’s lives are affected by multiple variables many of
which are power related (Rathgeber 1995). Questions related to the condition of

the lives of women and their position in society can be addressed by utilizing

“action-research undertaken from a GAD perspective, with a postmodern
attention to difference, discourse, and power” (Rathgeber 1995).
Family Stress Theory

Family stress theory is implemented in this thesis as a framework in which
to examine how the Tanzanian family functions in context under stress caused by
the HIV/AIDS epidemic. Family stress theory examines "the ways families
produce, encounter, and cope with stress" (McCubbin and Figley 1983).
McCubbin and Patterson (1983) define a stressor as a “life event impacting upon
the family unit which produces, or has the potential of producing, change in the
family social system”. Stress processes are viewed as occurring in an ongoing
manner in which constant interaction and change take place. Multiple stressors
can occur simultaneously and overlap (Burr and Klein 1994).

Family stress theory assumes that family systems are in a constant state
of flux. The family experiences a continual flow of economic, social and
ecological factors that require ongoing adjustment and adaptation by family
members. Family systems may maintain somewhat predictable patterns of daily
routines when not experiencing stress. Some stressors cause changes to occur
within or outside of the family that are expected and predictable. However, other
stressors can cause changes to take place from within or outside the family
which cause it to become strained and over burdened (Burr and Klein 1994).

As families grow and change they develop “rules of transformation”.
These rules govern the daily routines of life. Families develop rules about how

things should be done and are able to transform inputs into outputs in ways that

allow them to attain individual and family goals. If transformation processes are
not sufficient for families to handle a change or new input in the system the
process of stress will occur. If a family does not have rules to cope with the
stressful situation, then it may have difficulty dealing with a new input. The
attention of family members can be diverted to the stressful situation, thus
disrupting other important interactions and activities (Burr and Klein 1994).

A stressful situation may cause families to make changes in structure and
function. McCubbin and Patterson (1983) state “Families in crisis, which face
excessive demands and depleted resources, come to realize that in order to
restore some functional stability and/or improve family satisfaction in their
system, they need to make changes in their existing structure which may include
modifications in established roles, rules, goals, and/or patterns of interaction”.
Research on stressors such as HIV/AIDS that effect families and the subsequent
transitions that occur can assist in supplying information to programs directed at
promoting family strengths and capabilities so that families are enabled to
manage crises (McCubbin and Patterson 1983).

Summary of Chapters

My objective in Chapter one is to present a picture of the current situation
of the HIV/AIDS epidemic in Africa. In order to do this a statistical overview of
HIV/AIDS in Africa is presented along with an explanation as to why it is
important for the case of East Africa to be considered. The utilization of the
family as the unit of analysis is discussed. The ways in which HIV/AIDS differs
from other African crises are examined and supported by incorporating the family
stress theory into the discussion. To understand the impact HIV/AIDS has upon

the East African family it is necessary to examine the ways in which the disease

may differ from other crises the family has dealt with in the past. Finally, this
chapter looks at what is called an underestimated consequence of HIV/AIDS:
orphans. In East Africa many children will lose one or both parents to the
epidemic. However, many communities and families have not come to grips with
this consequence nor are they prepared for it.

Chapter two focuses specifically on the East African country of Tanzania.
The importance of examining the family in context is emphasized. The effects of
HIV/AIDS will vary according to physical and social location. This chapter
examines the economy, health care services, structural adjustment program, and
familial organization of Tanzania. The context in which a disease occurs will
effect the way it is viewed, the impact it has upon families and communities, and
the ways in which the impact is counteracted. The importance of the extended
family in East Africa is stressed in this chapter.

The extended family is a source of support in times of crisis. The ability of
the extended family to function in this capacity under the current conditions is
called into question. Social conditions may be in such a state that the extent to
which the extended family can act as a support system to its members is limited.
Chapter two also examines gender based care issues directly related to the
HIV/AIDS epidemic. Women have historically held the role of caregiver in African
families and are being called upon in an extensive capacity to care for the ill and
orphaned as a result of AIDS.

The increasing need for formal orphan care models is examined in
Chapter three. A statistical overview of AIDS orphans in Africa is presented.
This chapter discusses what happens at the family and community levels when a
generation is lost. Who will be held responsible for the care of children, some of
whom are HIV and tuberculosis positive? Three models of formal orphan care

are examined: orphanage/child rehabilitation center, foster care program, and

community based volunteer program. Additionally, the fact that women are key
players in informal and formal orphan care is explored.

Chapter four identifies gaps in the literature on the topic of this thesis.
Suggestions are offered as to what areas need further research. Areas in which
program development should be promoted and/or improved are identified and

recommendations are offered to improve these areas.

CHAPTER 1

AN INTRODUCTION TO THE PROBLEM FACING AFRICA

HIV/AIDS has been called a crisis of pandemic proportions, the "human
disaster" (UNAIDS 1998), the "grandmother’s disease" (Kelso 1994). It is known
as the cause of "skip generation parenting" (Campbell 1999), the "parentification
of youth" (Campbell 1999), and the "beanpole family structure" (Hooyman and
Gonyea 1995). Recent estimates present a disturbing picture of life in Africa,
particularly in East and Southern Africa.

This chapter contains a statistical overview of the HIV/AIDS crisis in Africa
and justifies the importance of examining the problem facing East and Southern
Africa. Second, this chapter stresses the significance of looking at the problem
from a familial perspective. Third, it examines the nature of AIDS as a disease of
crisis proportions and the way in which the disease impacts the family in ways
that other crises in the past have not. Fourth, this chapter looks at what has
been called one of the worst repercussions of the AIDS epidemic; the rise in the
number of orphaned children.

Why Africa?
Barnett and Blaikie summarize the importance of examining the impact of

HIV/AIDS upon Africa in their statement below.

The importance of writing about Africa is that on that
continent the disease is spreading very rapidly in
impoverished communities which depend on human
labor for survival where the levels of national poverty
are already so great that the resources for dealing

with the care of the sick and dying and the orphans

are already extremely scarce (Barnett and Blaikie 1992).

As mentioned here, the kinds of health problems caused by HIV/AIDS directly

affect families' and children's quality of everyday life experiences and their ability
to survive.

Statistics of the past few years paint a grim picture of sub-Saharan Africa
in the wake of the HIV/AIDS epidemic. In 1997 the World Health Organization
(WHO) estimated that more than 80% of people living with AIDS resided in
Africa, with AIDS being the leading cause of death that year (BBC News 1997).
UNAIDS and WHO estimated that 7 out of 10 people newly infected with HIV in
1998 lived in sub—Saharan Africa. Eighty-three percent of all AIDS deaths that
have occurred since the epidemic began have been in the region of sub-Saharan
Africa. Moreover, two million Africans died of AIDS in 1998. Yet, only one-tenth
of the world's population lives in Africa south of the Sahara (FAO 2000).

WHO calculates that 20% to 40% of children born to HIV positive mothers
will be infected, develop AIDS and die before the age of five. The remaining 60%
to 80% of children will not be infected with HIV, but will be orphaned within the
first 10 years of their lives (AIDS Analysis Africa 1992). The definition of AIDS
orphan may differ according to locality. In most cases an AIDS orphan is defined
as a child or youth 15 years of age or younger who has lost one or both parents
because of AIDS (Status and Trends of the HIV/AIDS Epidemic in the World
1998). In some literature the term orphan is not distinguished as HIV-infected or
non-infected.

Most children suffering from AIDS die within the first five years (Grant
1991), and most orphaned children are under the age of 5 years (Okeyo 1995).
In 1998, four out of every ten children living in rural areas of East Africa who
have lost one parent by age 15 have lost that parent to an AIDS related cause
(Daley 1998). Commonly, more than one child from a family is orphaned.
Children are usually incorporated into one household, although in some cases

children may be divided and incorporated into more than one household.

10

HIV/AIDS has lead to increasing tuberculosis rates (Chintu and Mwinga
1999). HIV/AIDS "is the most important risk factor so far identified to turn latent
TB infection into active tuberculosis" (Churn and Graf 1993). A person who is
HIV/AIDS infected will be likely to develop active tuberculosis because her/his
immune system becomes depressed (Chum and Graf 1993). According to
Chintu and Mwinga (1999), "Continued transmission of infection in areas with
high levels of HIV infection, coupled with poor standards of living, reduces the
hope of controlling tuberculosis in the foreseeable future" (Chintu and Mwinga
1999).

Tuberculosis can be transmitted from HIV infected individuals to heaIthy
members of the population (Chum and Graf 1993). Cure rates are often low in
many parts of rural Africa because of "irregular drug supplies and inability to
supervise treatment" (Chintu and Mwinga 1999). Chintu and Mwinga (1999)
claim that the tuberculosis "epidemic has overwhelmed the health services of all
sub - Saharan African countries".

According to Mukangara and Koda (1997) the number of AIDS related
tuberculosis cases in sub-Saharan Africa has doubled between 1980 from
100,000 to 200,000 cases in 1990. In 1999 over 60% of children and 70% of
adults who were HIV infected were also infected with tuberculosis (Chintu and
Mwinga 1999). In Tanzania 25,210 tuberculosis cases were reported in 1991;
27,000 in 1992; and an estimated 36,000 in 1995. Approximately 30%-40% of
tuberculosis patients in_Tanzania in 1993 were also HIV positive. In 1993 forty
percent to frfty percent of the Tanzania population around 40 years of age was
infected with the tubercle bacillus. Tuberculosis can occur in children, however it
is rarely infectious and can be cured with treatment if it is available (Chum and
Graf 1993).

In the countries of East and Central Africa in the 1990s, between 1.5 and

2.9 million reproductive age adults died from HIV/AIDS. This estimate was
expected to produce between 3.1 and 5.5 million AIDS orphans in the region.
Meaning, 6% to 11% of the population under 15 was orphaned (Djeddah 1997).
At least 95% of all AIDS orphans are Africans (Status and Trends of the
HIV/AIDS Epidemic in the World 1998). According to UNICEF, by the year 2010,
forty million children will lose one or both parents because of AIDS (Dispatch
Online 1998). These figures are even more alarming when the number of non-
AIDS orphans are added (The Status and Trends of the HIV/AIDS Epidemic in
the World 1998).

AIDS rates vary according to country with some having relatively low
levels of infection, while others, such as Kenya, Tanzania, Zimbabwe, Uganda,
Rwanda, Zambia, Malawi, and Zaire are among the worst affected countries in
Africa (BBC News 1997; Barnett and Blaikie 1992; UNAIDS 1998). The statistics
clearly point to the countries of East and Southern Africa as the worst impacted
areas. Therefore, it is necessary to examine what is occurring in these countries
now in order to assist them in generating social and material resources in the
future. Additionally, by studying areas that are worst impacted, lessons can be
learned and solutions formulated for other areas that may be on a similar
pathway.

Familial Perspective

In this discussion the family is defined as "a group of persons related to
each other by blood and/or marriage" (Hogget and Pearl 1983 cited by Ncube et
al. 1997). A fuller definition of the African family and its functions is found in
chapter three. Examining the AIDS epidemic from a family centered perspective
is necessary for two primary reasons. First, examining AIDS from such a
perspective makes sense because the disease presents a health risk to the

entire family unit (McGrath 1993 cited by Jackson and Civic 1994). If one spouse

12

within the nuclear family unit is HIV infected, the other spouse will have a great
chance of infection also. One or more children of an HIV infected mother may
also be infected. Second, specific to this discussion, it is the family unit in Africa
that has conventionally cared for iII members and taken in orphaned children.
Thus, the family, nuclear and extended, may be infected with or affected by the
disease in the form of illness or in the form of caring for its members.

It is the family that mediates existing circumstances, be they positive or
negative. The role of the family during periods of "threat, impact, and post-
impact recovery" is of central importance to the continuation of the life of the
family (McCubbin and Figley 1983). Historically, families have formed the first
line of defense against stresses caused by disaster. The family as a unit acts as
a natural stress buffer and support group for its individual members (McCubbin
and Figley 1983). Adepoju and Mbugua (1997) state that within Africa "it is the
family as an entity - rather than the individual members of the family - which
defines the types of adaptation mechanisms as well as the boundaries of
adaptation parameters employed by each member of the family".

This discussion will apply the family stress theory to the examination of the
HIV/AIDS epidemic in the contextual setting of Africa. Family stress theory
examines "the ways families produce, encounter, and cope with stress"
(McCubbin and Figley 1983). Using this perspective will allow us to examine
how the family in Africa has managed crises in the past and how the family may
function under the stress of the current HIV/AIDS crisis.

A contextual model will be implemented in this examination. The family
does not thrive in isolation, but is part of a larger cultural context that influences
its function and the way it manages stressful events. The cultural context defines
the larger society's rules for problem solving, management styles, and accepted

methods of managing stress. The larger culture thus provides the rules by which

13

the family operates at its micro level (Boss 1988).

However, it is important to realize that not all families within the same
community or culture are homogeneous. They may react differently to a stressor
for various reasons. The ways in which families react to stress within their
internal dimensions of kin and resources, and the ways in which they access and
put to use external resources within the surrounding community may vary greatly.
Application of the family stress theory should aid in exploring how the African
family manages a stressor that has crisis potential. Moreover, it should aid in
formulating and answering questions such as: what factors determine a family's
ability to care for the ill and to absorb orphans; and what is the influence of
kinship relations on‘pattems of caregiving within stressful or crisis situations?
HIV/AIDS: Just Another African Crisis?

Does the impact that AIDS has upon African peoples differ from the ways
in which other crises such as famine, migration, previous wide spread heath
epidemics, or war have affected the family and community? Other crises,
including famine, war, and health epidemics have had a detrimental impact upon
Africa. Even migration of peoples from one location to another has affected
some peoples of Africa negatively. Can we realistically categorize the impact
AIDS has upon African society into a different category than the aforementioned
sources of change? Let us consider the distinct nature of HIV/AIDS by carefully
examining the unfamiliarity of dealing with the disease, its chronic or long-term
character, and the unique way in which the disease affects families and
communities.

The Unfamilian'ty of HI V/A IDS

According to Hill a stressor is "a situation for which an individual, family, or

community has had little or no preparation, therefore posing a formidable

problem with crisis potential" (Hill 1958 cited in Anderson 1990). An individual or

14

family may experience stress associated with many differing life events that
cause change to occur. A stressor develops into a crisis when the family
experiences an inability to restore stability to its daily life and an inability to
perform usual functions. The family under a stressor of crisis proportions will
experience "constant pressure to make changes in the family structure and
patterns of interaction" (McCubbin and Patterson 1983). AIDS has proven to be
a stressor of crisis potential.

When a family experiences a stressor such as HIV/AIDS that "disrupts
their everyday life events, causes disorganization, or incapacitates the family
system", various coping strategies are applied in hopes of alleviating stress
(McCubbin and Patterson 1983). Coping is the process by which families make
an effort to adapt to changing circumstances and to achieve a new level of
organization or balance. Coping involves an interaction of resources and the
management of resources. In other words, coping is a combination of the
family's ability to acquire resources and to manage resources in a manner that
will alleviate stress. Resources consist of the social and material attributes of
families and communities (McCubbin and Patterson 1983).

When a population or family is aware of the occurrence of a potential
event or situation because it has in some way in the past affected them or others
around them, coping mechanisms can be developed in advance (Barnett and
Blaikie 1992). lnforrnation about such events or situations becomes "knowledge"
that facilitates action. This knowledge may reside in "tradition" or "custom" and
may facilitate various methods of contextual "problem solving" (Barnett and
Blaikie 1992). Moreover, in order for an impacted population or family to deal
with crisis causing circumstances they must first be able to identify and
understand the circumstances in a way that is meaningful to them (Barnett and

Blaikie 1992).

In a crisis that is perceived as familiar and as having some normalcy,
meaning that it has occurred at sometime in the past, it is expected that the
circumstance, coping strategies, and outcomes will be consistent with the past.
For example, coping strategies applied during famine may be an extension of
practices conducted in some form during a normal year (Barnett and Blaikie
1992). Barnett and Blaikie (1992) contend that a "vast majority" of coping
strategies are "in situ" strategies that can be "broadly classified as self-help".

Conversely, AIDS presents an unfamiliar crisis of "abnormal" content. In
the rise of an unfamiliar crisis "the past does not provide a satisfactory guide for
the future" (Barnett and Blaikie 1992). Throughout African history, various
countries have experienced famine, drought, war, health crises, and economic
disasters. However, these crises causing circumstances do not provide
adequate guidance for developing viable coping strategies to contend with the
effects of the AIDS crisis. Moreover, "No model of a fatal illness comparable to
AIDS, striking both parents and children, exists" (Boland, Czarniecki, and Haiken
1992 cited by Campbell 1999). A "situation of uncertainty" is brought about by an
unexpected circumstance such as the AIDS epidemic (Barnett and Blaikie 1992).

Although many regional areas have already been affected by the AIDS
epidemic; individuals, families, and communities are still searching for and
experimenting with coping mechanisms that will allow them to continue their life
in some form of normalcy. As the number of family and community members
who fall ill and die increases other stress management strategies will be tested.
Moreover, AIDS affects many families at the same time limiting the helping
capacity of social networks. It is true that all societies have mechanisms that
allow them to cope with death, but large numbers of deaths may overwhelm
those mechanisms (Barnett and Blaikie 1992).

Over time in impacted areas families and communities will experience a

16

transition from "known" to "unknown" circumstances and from "normal" to
"abnormal" daily routines as infection and mortality rates increase (Barnett and
Blaikie 1992). lnforrnation defined as "knowledge" of how to handle the AIDS
epidemic will remain in flux as circumstances change. Even families that have
developed useful coping strategies to deal with their current situation will
experience periods of transition if their situation changes and will thus seek to
develop other strategies to assist them with the newness and uncertainty of their
condition (Barnett and Blaikie 1992).

Additionally, "the burdens of having HIV disease, particularly the secrecy
and stigma associated with it, may be worse than those of other illnesses"
(Campbell 1999). Taylor-Brown et al. (1998), claim "there is a conspiracy of
silence among family members and other caregivers" who are associated with
HIV/AIDS infected individuals. The stigmatization surrounding HIV/AIDS may
have a detrimental effect on family support. Often family members do not
understand HIV/AIDS and have not been educated about it. Families are afraid
of contracting HIV. Children are especially susceptible to stigmatization
associated with AIDS even if they are not infected. When a child or children lose
one or both parents to AIDS they may be assumed to be HIV infected also.
Adults may consider children from such families as less desirable especially if
they are ill and showing signs of HIV infection. In addition to the stigma
associated with HIV/AIDS, children may also carry the burden of being
stigmatized if they have tuberculosis.

The way in which the public views HIV/AIDS, and likewise tuberculosis,
has a great influence on the lives of infected individuals and those in which they
are in contact. In turn, this has an effect on the support system and coping
mechanisms of the infected. The stigmatization of the infected may affect their

access to informal and formal support and other resources.

17

Chronic/Long- Term Crisis

A chronic stressor can be defined as a "situation of disturbed equilibrium

that persists over a long period of time" (Boss 1988). Chronic stressors pose

four characteristics that affect the degree of stress experienced in a family:

1.

2.

Long duration: the stressor will persist over a long period of time and it will be
difficult to change the situation (Boss 1988).

Ambiguity in the stressor's origin, progression, and conclusion: there is an
uncertainty surrounding the situation's onset, development, and conclusion
(Boss 1988).

Pile-up: a stressor of long duration will have a great chance of coinciding with
other stressors causing a pile-up of stressors (Boss 1988).

The stressor situation will develop slowly and/or have a long aftermath: the
stressor has the potential to drain the resources of family and community
alike. Thus, the stressor may disrupt kin and friendship networks

(Patterson and McCubbin 1983).

AIDS has been described as a long wave disaster by Barnett and Blaikie

(1992) "because it is a disaster that is a long time in the making and in which the

major effects have already begun to occur long before the magnitude of the crisis

is recognized and any response is possible". Furrthennore, AIDS can be

described as possessing the other three characteristics listed above. Its long

duration may leave the family in a state of ambiguity and may also exhaust their

financial resources. Likewise, there is a strong possibility that other stressful

events or situations will arise within the family during the duration of the illness.

For example, circumstances such as food shortage, financial difficulties, and

other situations that strain the family may occur within the time frame in which a

family member becomes ill and passes due to AIDS.

Impact Upon Families and Communities

Why reference AIDS as the "grandmother's disease" (Kelso 1994), the

cause of "skip generation parenting" (Campbell 1999), the "parentification of

youth" (Campbell 1999), and the "beanpole family structure" (Hooyman and

18

Gonyea 1995)? These references reflect the unique impact AIDS has upon the
family. In the case of a chronic illness such as AIDS, family patterns of
managing life situations are likely to be disturbed in such a way that family
restructuring and role adaptation will inevitably occur.

AIDS presents families with a unique configuration of challenges. Within
the family multiple AIDS related deaths can occur. Families in which one or more
deaths occur must restructure their unit often by making alterations to the identity
and role of members (Campbell 1999). The role of the ill or deceased family
member will partially determine to what extent alterations are made within the
family after her or his death. For instance, the death of a caregiver will impact
the family in a different way than the death of a person that supports the family
financially. Furthermore, the emotional and economic stress of ill health and
death are experienced several times over in the case of multiple deaths, thus
impacting the family in a cumulative manner (Barnett and Blaikie 1992).

The death of a family member results in "drastic reallocation of critical
roles within the family" (Patterson and McCubbin 1983). Families that lose
multiple members between the ages of 15 and 49 may take the form or a
"vertical" or "beanpole" family. This occurrence leaves the young and the old to
supply social and financial support for those family members remaining
(Hooyman and Gonyea 1995).

Family "change is as much about the character of relationships within
families as about the size and structure of family units" (Ncube et al. 1997). The
"grandmother‘s disease", "parentification of youth", and "skip generation
parenting" refer to the reality that grandparents and eldest siblings may transfer
into the role of caregiver upon the death of a parental caregiver. In some
instances, other members of the extended family, such as a sister or brother of a

deceased parent may be called upon to care for children who have lost a parent

l9

or parents. It is the nature of the disease that for most orphans the loss of one
parent will shortly be followed by the loss of the other.

Sources of stress and hardships associated with chronic illness and family
restructuring include: "modifications in family activities, burden of increased
tasks and time constraints, increased financial burden, and increased caretaking
burden" (Patterson and McCubbin 1983). Moreover, family members who take
on increased tasks in addition to the duties that their role currently carries may
experience role ovenoad. For example, grandparents may experience role
overload if they continue to perform conventional grandparenting duties and also
take on the role of parent to their grandchildren (Weisner 1997).

AIDS presents a different situation for caregivers compared to other
illnesses. Quite often a caregiver, who is generally a woman, will be HIV/AIDS
infected as well. According to Campbell "infected women are often affected by
HIV/AIDS both as caregivers and as needers of care" (Campbell 1999). Hence,
gender plays a pivotal role in caregiving and is "highlighted in the presence of
HIV disease" (Sherr 1995 cited Campbell 1999). Gender tends to be more of a
determining factor in who assumes the caring role than kin ties (Hooyman and
Gonyea 1995).

According to Campbell, 'Women in general are more likely than men to
care for their children, spouses, friends, and elderly relatives" (Baines et al. 1991
cited by Campbell 1999). Furthermore, 'Women are found providing informal
HIV/AIDS care in their roles as mothers, grandmothers, wives, daughters, sisters,
and aunts" (Richardson 1988; Stephens 1989 cited by Campbell 1999).
Increased economic and domestic obligations are being placed upon women
who may not have access to needed resources that will allow them to adequately
carry out the role of caregiver. Additionally, taking into consideration that

grandmothers may be elderly and close to death themselves, and that roughly an

20

equal number of men and women die from AIDS, the result will ultimately be a
shrinking pool of caregivers.

The impact of HIV/AIDS extends far beyond the family. As the AIDS
epidemic progresses, its impact has become an expanding crisis with
catastrophic consequences for not only families, but also for the communities in
which they live (Taylor-Brown et al. 1998). AIDS is likely to cause the death of
not only multiple family members, but also friends and neighbors. Moreover, the
cumulative effect of generational loss associated with AIDS can affect an entire
community's well being.

The loss of adults in their most economically productive and child rearing
years is sure to impact both the family and community structure and functions. In
other words, the death of these members will result in the loss of "the productivity
potential of a generation of young people who will not be able to contribute to
their family's and community's income and welfare" (Campbell 1999).

According to Jackson and Civic (1994) community consequences that may result

from the prevalence of HIV infection and the growing number of AIDS cases are:

the availability of skilled and professional labor will be
adversely affected; individual workplaces and the economy
as a whole will come under increasing strain; health costs
will escalate; home care will increasingly be needed instead
of hospital care; and an increasing number of children will
experience the death of one or both parents; increasing
numbers of orphans will need care.

Additionally, the transmission of local indigenous knowledge and expertise that

flows from adults to children may be lost (FAO 2000).

2]

Orphans: An Underestimated Consequence

One of the most distressing long-tenn consequences of AIDS is the
increasing number of orphaned children. Black (1991) states, "Regardless of the
exact rate of increase in orphaned children, many African countries will see a
steep rise in their numbers which will have far-reaching effects on demographic
and social patterns" (cited by Jackson and Civic 1994). The newspaper
headlines and articles listed below illustrate the rise in the number of orphans
and send a warning signal to the public. The rise in the number of orphaned
children will place a tremendous strain on families and social systems to cope

with the intensifying conditions (Foster 1998).

. AIDS Orphans - A New Epidemic with Disaster Implications (Okeyo 1995)
. Who will take care of the AIDS orphans? (AIDS Analysis Africa 1995)

. AIDS expected to orphan one third of children in Zimbabwe (Key 1996)

. Africa's emerging AIDS - orphans crisis (Baggaley and Needham 1997)

0 40m AIDS orphans by 2010, UNICEF chief warns (Dispatch Online 1998)
o Orphaned by AIDS, Zambia's lost generation fills the streets (CNN 1999)

o Africa's AIDS orphans are fast-growing population (Key 1999)

WHO estimated that there would be 10 million children orphaned by AIDS
worldwide by the year 2000. Okeyo (1995) asserts that "failure to tackle the
orphan problem with the resources it deserves could see the late 1990s and
early part of the 21st century a period of economic disruption and political turmoil
in Africa". Hence, in the long run, as a result of the death of the middle
parenting/working generation, the work force will become younger, less

educated, and may have physical problems due to malnourishment as a child.

At the family level burdens and stresses placed upon the extended family are
increasing as they attempt to continue their conventional role as caregiver to
orphaned children. There is also an increased burden at the societal level to
provide services for ill and orphaned children that may include budgeting for
orphanages, health care, and other areas at the community and national level
(Foster 1998).

The indirect toll that the disease has upon caregivers and youth
internationally is not always apparent nor is it at the fore front of efforts being
delivered by international agencies to combat the spread of HIV/AIDS (Foster
1998). There has been a great focus on what can be done to prevent the spread
of HIV/AIDS and to treat its victims, but what about the survivors, many of who
are children, and those that must care for them? Some academics and
development practitioners have realized within the past few years that the rise in
numbers of orphaned children could pose a substantial problem to both the
family and the community. However, it seems that efforts are slow to reach the
ground and may be gradually reaching areas that are in need of assistance.

Why has this repercussion of the AIDS epidemic been slow to be
acknowledged and not at the forefront of academic and development endeavors?
This oversight has occurred for three primary reasons. Conventionally, the family
in Africa has been perceived as the provider of a secure structure in which its
members could find refuge and support . Second, because the AIDS epidemic
has a cumulative nature many people within and outside of AIDS affected areas

may not realize that occurrences at the micro level foretell a macro level crisis

23

(Adepoju and Mbugua 1997). The picture becomes alarming when looked at
from a broad perspective. Third, HIV/AIDS is commonly treated as a medical
problem and not recognized as a problem causing repercussions at the social
level.

Conclusion

As this chapter has suggested, it is important to examine the impact of
HIV/AIDS on African communities because the disease has spread rapidly
through areas that are impoverished and that depend on human labor for
survival. Such areas may not possess the resources to deal with the care of
those affected by and infected with HIV/AIDS. Tanzania is one of the countries
affected most by the spread of HIV/AIDS. The rate of HIV infection among adults
from age 15 to 49 in Tanzania is 8.09%. Tanzania is also one of the poorest
countries in the world (UNAIDS 2000 cited by Health Canada).

HIV/AIDS presents a health risk to the entire family. The family in Africa
has traditionally cared for the ill and the orphaned. The conditions that AIDS
presents differs from the ways in which other crises have affected the family and
community. The disease is an unfamiliar crisis that presents unique challenges.
HIV/AIDS affects the structure of the family and alters its function. The elderly
and adolescents may be called upon to care for its infected and affected
members. HIV/AIDS infected women are often caregivers and needers of care.
The loss of a generation will impact the welfare and economic stability of both the

family and the community.

24

CHAPTER 2
CONTEXTUAL SETTING AND FAMILY STRUCTURE

Diseases are both biological and socio-cultural events. Their material
and social profiles are shaped by particular political, economic and cultural
circumstances (Lindenbaum 1 99 7).

According to Akeroyd (1997) “the personal, gendered and socio-economic
impacts of HIV-related illness and AIDS will vary in different sociocultural and
economic systems, between rural and urban areas, between social categories
and age cohorts”. Therefore, there is a need to situate local social forms within
broader regional and national social structures. The family can be viewed as a
social institution that is inherently connected to other social institutions. Changes
that occur in other social institutions will to some degree affect the family.
Moreover, "the changes affecting the family are unavoidable for they are from
outside the family institution" (Omari 1991).

The family in Tanzania can be examined and understood from this
perspective. Increasingly the extended family in Africa is fragmenting through
the combination of pressures such as poverty, migration, urbanization, land
shortage, conflict and disease (Owen 1996). Family relations have been
seriously strained. A worsening crisis like that of AIDS often renders family
support networks fragile and damaged. Moreover, as stated by UNECA (1989)
“the wider social fabric in many areas is shredding, leaving many people without
the safety net of social relations" (cited by Schoepf 1993).

AIDS deaths represent only a fraction of the total number of deaths from
all causes in Africa. During the19703 and 19803 economic instability, the break
down of government infrastructure and civil strife contributed to increasing the

number of orphans. More recently, the number of orphans has grown due to the

25

AIDS epidemic. AIDS and the increasing number of orphans places a strain on
an economy that is emerging from a long period of deterioration (Turshen 1999).
It is only with an understanding of specific social and historical contexts that an
effective mobilization for coping with the devastation of AIDS can be
implemented.

Understanding the impact of AIDS requires researchers not only to
contextually examine the struggles associated in coping with AIDS, but also to
examine a number of issues that may assist or impair those involved in the
situation (Bond et al. 1997). If we take a broad contextual look at the setting in
which the AIDS epidemic is occurring we can then begin to see the other factors
that play into the crisis and how they effect coping strategies employed.

This chapter will look at the country of Tanzania as a social entity which
has gone through changes at varying levels that have affected the state of the
family. In order to view Tanzania from this perspective it is necessary to look at
the social and cultural aspects of the country as well as the people that inhabit it.
The first section of the chapter will include a brief look at Tanzania's economic,
education, and health care sectors; and structural adjustment program. The
second section will consider the family contextually. The third section will take a
look at the importance of the extended family. A gender perspective will be
explored in the fourth section. The fifth and final section will offer a brief
conclusion.

Tanzania

Tanzania’s population, estimated in July, 2000 was 35,306,126: 0-14
years 45% (male 7,970,453; female 7,883,442), 15—64 years 52% (male
9,110,501; female 9,325,726), 65 years and over 3% (male 463,889; female
552,115) (The World Fact Book 2000). Tanzania is considered to be one of the

poorest countries in the world. Its estimated per capita GNP for 1995 was $120

26

US. Tanzania has been successful in reducing rural poverty. The percent of the
population living in severe poverty, earning less than $0.75 per day, dropped
from 51% in 1983 to 42% in 1991. As a result of economic growth, there were
fewer people living below $0.75 per day in 1991 (9 million) than in 1983 (11
million). Unfortunately, economic growth has been accompanied by greater
gender inequality (World Bank 1997).

Tanzania's economy has been agriculturally oriented for centuries. The
majority of people are small-scale farmers who cultivate small individual family
plots. In 1989, eighty-five percent of Tanzania's population resided in rural areas
(Omari 1989). In 1999 the rural population had fallen to 78%. Although the
urban population is increasing, agriculture continues to be the backbone of the
Tanzanian economy. More than 80% of the economically active population is
engaged in food production. Agriculture constitutes the country’s principal
source of income, providing about 50% of the GDP and more than 90% of export
earnings (The World Fact Book 1999).

Education

Tanganika was granted independence from Britain in 1961. The
Tanganyika African National Union (TANU) party was designated control of
Tanganika. It was through this party that Julius Nyerere, Tanzania's first
president, created his version of African socialism. Nyerere's socialist program
was called Ujamaa (Hedlund et al. 1989). Ujamaa meant "family cooperation"
and an "attitude of sharing, cooperation and respect between people" (ILRIG
1988).

Nyerere designed the Ujamaa program with the intention to "extend the
social protection existing within the family onto the wider concept of society as a
whole" (Hedlund et al 1989). Ujamaa called for an education for self-reliance or

independence. The policy of self-reliance came into effect under the Arusha

27

Declaration of 1967. The declaration "established that Tanzanian officials should
be dealing with the practical problems of the country side and seeking to identify
more closely with workers and peasants, rather than concentrating on making
money in the capital" (Hedlund et al. 1989). Additionally, more money was to be
spent on primary schools (ILRIG 1988).

Tanzania had a literacy rate of 61% in 1975 and 90% in 1984. In 1988
ninety-three percent of males and eighty-eight percent of females were literate.
Literacy rates declined to females at 70% and males at 80% by 1997
(Mukangara and Koda 1997). Mukangara and Koda (1997) claim that the decline
in literacy rates is a result of reduced government investment and donor support.
Tanzanian education policies adopted after independence were meant to
"distribute and equalize educational opportunities" and to expand "educational
institutions at all levels (primary, secondary and university schooling)" (World
Bank 1986). In an effort to supply equal access to secondary education
Tanzania abolished secondary school fees in 1964. Primary school fees were
later abolished in 1973. Educational equality was further sought by establishing
a uniform primary school curriculum (World Bank 1986).

In 1985 the Tanzania Government adopted the first economic structural
adjustment program. Cost sharing came into operation under this economic
program. Cost sharing does not mean that parents must pay the full school fee,
but that parents share part of the fee. For example, often parents are required to
supply the cost of travel, books, paper, pencils, and other such items (Mosha
2001)

Since independence, the Tanzanian government has allocated about 20%
of its budget to education. In 1977 universal primary education was established
in Tanzania (World Bank 1986). In 1994 the enrollment rate for Tanzanian

children in primary schools, public and private, was 1,923,062 males compared

28

to 1,873,768 females. In the same year, the enrollment rate for form I-IV,
including public and private schools, was 81,699 females compared to 104,547
males; and in form V-VI the rates were 77,969 females compared to 95,651
males (United Republic of Tanzania 1995).

It was reported in 1996 that 47% of primary school age girls did not attend
school in Tanzania (Lone 1996). The gross primary school enrollment rate fell
from 93% in 1980 to 74% in the early 19905 and reached 78% in 1995.
Tanzania's secondary school enrollment rate is one of the two lowest in the
world. Tanzania had a secondary school enrollment rate of 5% in 1995,
compared to a rate 11% in Uganda and 25% in Kenya (Lone 1996).

Although formal primary education starts at age seven in Tanzania
delayed enrollment is common. The attendance rate reaches its peak of 85% at
the age of 13 and then begins to drop. In 1993/94, the age for the average girl to
begin primary school in Tanzania was 9 years old, while the age of the average
boy was 10. About 50% of children ages 14 -17 have left secondary school or
have never started secondary school. About 25% of students continuing to
upper secondary school are female. Thus, one of the key issues is increasing
the number of girls that successfully progress from primary to secondary school
(World Bank 1997).

Why do these educational disparities exist to such a great extent between
females and males in Tanzania? Economic limitations of the family and/or
cultural practices cause some children, mostly girls, to not attend school and to
sometimes do poorly if they do attend (Pollitt 1984). Household demands have
been found to be a key determinant in girl's educational participation. Parents
must weigh the benefits of the girl and her family against the costs to educate
her. Studies indicate that limited job market opportunities for girls and women

deter parents from sending their daughters to school (T ietjen 1991).

29

Parents may not consider education as necessary to fulfill women's role of
wife and mother. When a daughter marries benefits stemming from her
education may go to her husband's family and not her own. Education is often
viewed as inappropriate for the traditional societal role of women because it
could cause "them to exhibit less respect for male authority and to be unwilling to
work as hard" (T ietjen 1991). Additionally, girls are commonly expected to care
for younger children and work in agriculture. Tasks completed by girls such as
agricultural work and caring for the sick allow their mothers more time to
complete other tasks. Therefore, parents do not always view education as a way
to increase their daughter's productivity or economic and social value (T ietjen
1 991 ).

Even "free" education can cost too much for parents to send girls to
school. School associated expenses such as "recreational and activity fees,
exam fees, uniforms, supplies and material, transportation, lunches, and gifts to
teachers, etc." must be paid by parents (T ietjen 1991). Lone asserts (1996),
"when a poor family considers how much a daughter can help in cleaning,
cooking, collecting wood and water, and looking after younger children, and how
little opportunity there will be for her to get a paying job even if she is educated,
then the returns rarely seem to warrant the expenditure".

It is this logic that explains how families decide to educate their daughters.
Families living in conditions of poverty may not have the options from which to
choose that wealthier families have. Girls who are enrolled in school still bear
the burden of assisting with domestic chores and thus may be absent from class
frequently and may not have an adequate amount of time to complete their
homework (Lone 1996).

Structural Adjustment Program

The economic crisis experienced by Tanzania in the 1960s and early

30

1970s, led the government to submit to structural adjustment measures enforced
by the IMF and the World Bank in the mid 19808 (Moshi 1995). In 1974
Tanzania faced a major balance of payments deficit resulting from huge food
importation because of drought, and resulting from the effects of oil price
increases (Shao 1992). The structural adjustment program (SAP) implemented
in Tanzania, as well as in other African countries, involved cutbacks in
government spending on social services in basic needs areas such as education,
health, and employment (Moshi 1995). O’Brien states, structural adjustment
programs “have ignored or given insufficient attention to the social costs of
adjustment” (O’Brien 1991 cited by Gladwin 1993).

The poor of Tanzania, the majority of whom are women, are especially
negatively affected by social service cutbacks. The expansion of the Tanzania
health care network in the 1960s and early 1970s was short lived. The network
became too costly to support as a result of the late 19705 economic crisis and
the subsequent adjustment measures. The government designated its role as
the provider of social services to district authorities and village communities.
This venture began a decline in the health of the Tanzanian population. The
structural adjustment program stated that the Tanzanian government “would not
be in the position to restore social services to the level of the 1970s” (Moshi
1 995).

Household level sustainability appears to be related to women's lack of
power in the household. Economically, structural adjustments programs have
added to the burden of individual women by reducing "her and her family's
access to health, education and employment" (Mbugua 1997). SAPs have
allocated "resources to the detriment of women because they have failed to take
note of women's reproductive, productive and socializing roles" (Adepoju and

Mbugua 1997). It is often overlooked that gender biases built into SAPs have not

3I

only had a negative effect upon women, but consequently on their families
(Adepoju and Mbugua 1997).

Obbo (1995) states that the “AIDS epidemic occurred just as the IMF ’s
structural adjustment and cost-recovery programs were being implemented”.
The AIDS epidemic coupled with the effect of SAPs added to the already
demanding responsibilities placed upon women. SAP policies tend to “reinforce
the assumptions and stereotypes of women as nurturers” (Obbo 1995). The
current trend in community based health care providers lends a false image to
the reality of health care services. The reality is women are becoming
overburdened because of their role in caring for sick family members. In some
cases, women are coping with this burden by “re-instituting traditional community
networking mechanisms that had fallen into disuse during the 1960s and early
19705” (Obbo 1995). Traditional community networking mechanisms call upon
other women in the close vicinity, whether family or friends, to assist with caring
for the sick and orphaned (Obbo 1995).

All of these women are subject to a government that does not have the
funds to adequately meet the needs of the sick and the orphaned. Moshi (1995)
states that the “economic crisis has made it increasingly difficult for the
government to be able to maintain its employment policy". These events and
policy changes have led to an increase in unemployment and migration to urban
areas in search of wage employment (Moshi 1995). Increasing numbers of
family members, usually males, are migrating to urban areas for work (Campbell
1995).

As a result of rural economic decline migrants are increasingly staying in
cities and cutting ties to rural family. This occurrence can be seen in
contemporary Dar es Salaam (Campbell 1995). In the process of migration other

family members, usually women and children, remain in rural areas. Migration

32

often breaks family ties and increases child-care and production responsibilities
of women. (Ohuche and Otaala 1981). Remittances from the urban family
member may help to some degree to meet daily responsibilities. However, in the
light of the AIDS epidemic “rural populations may face a considerable economic
and psychological burden, caring for sufferers who return to their rural villages,
and/or losing remittances which maintain many rural households and may be
critical for socio—economic differentiation” (Akeroyd 1997).

Health Care Services

Three health care systems exist in Africa: traditional medicine,
biomedicine and itinerant drug vendors. Rural residents generally seek help from
traditional medicine and itinerant drug vendors, while urban residents are more
apt to turn to biomedicine in times of need. Rural residents may travel long
distances to urban health facilities to use biomedicine (Oppong and WIIIiamson
1996). Oppong and Williamson (1996) claim that many Africans today are self-
medicating with drugs supplied by itinerant drug suppliers rather than going to a
traditional healer or to an urban health facility that may be a great distance to
travel and offer unaffordable medical care.

Basic Western medical care in Tanzania is provided by the state and
Christian missions. Rural areas are likely to be served by local clinics. In 1999
the doctor/population ratio in Tanzania was 1 doctor per 22,900 people
(HealthNet Tanzania 2000). In 1997 forty-two per cent of Tanzania’s population
had access to health services. That figure would have probably been lower if
only rural residents had been taken into account (Mukangara and Koda 1997).
Koda (1995) reports that Tanzania does not have adequate public child care
facilities. Most Tanzanian day-care facilities are under staffed and poorly
equipped. Day care facilities may also charge more than most parents can afford

(Koda 1995). Hence, many parents, both rural and urban, count on family or

33

neighbors to assist with child-care when needed.

Fewer Africans are seeking care from formal sector health services
because fewer free services are available. In the light of structural adjustment
programs, governments have been forced to move from “free to paid health
services, from public to private health care, and from minor to major roles for
charities” in the health industry (Turshen 1999). As a result of these changes
fewer Africans are turning to Western style health services for care. The
changes in health services correlate “with increases in illnesses and fatalities” in
Africa (Turshen 1999).

The Tanzania population is “under-serviced in the health sector and under
protected against morbidity and mortality” (Turshen 1999). It is yet facing further
strain on the ability to cope. The increasing number of ill children and adults and
orphaned children due to the AIDS phenomenon is further straining the economy
and family relations (Turshen 1999).

Contextualizing the Family

The family does not thrive in isolation, but is part of
a larger cultural context that influences its function (Boss 1988).

Cheal refers to "social location" when emphasizing the importance of
context and the need to recognize situational circumstances such as socio-
economic status and culture as they affect individual and familial choices (Cheal
1991 cited by Dillaway 1999). Weisner (1994), similar to Cheal, emphasizes the
"cultural place" as containing the "physical and ecological aspects, resources
which provide constraints and opportunities for survival, demographic
characteristics and health and mortality threats - as well as beliefs, practices and

social arrangements shared by its residents which make living in that place

34

meaningful".

It is the larger culture of which families are part that provides the rules by
which the family operates and interprets its surroundings at the micro level (Boss
1988). The cultural context also defines the larger society’s “rules for problem
solving, management styles, and accepted methods of managing stress" (Boss
1988). The definition of family reflects a cultural and historical moment in time.
Moreover, the family is in a constant state of change.

The socio-economic context must be taken into consideration when
examining the family and its functions. When looking at the country of Tanzania
one must consider that the majority of the population lives or has lived in rural
areas where traditional values and norms to a greater or lesser extent are still in
operation. The families found in urban centers such as Dar es Salaam, are a
small proportion of the entire population (Omari 1989). It is important to realize
that the family’s social and cultural location will influence the impact of a crisis
and the ways in which it attempts to manage and overcome the crisis.

Familial Organization in Tanzania

Tanzanian culture is a "combination of the customs, norms, beliefs and
traditions of more than 120 ethnic groups” (Mukangara and Koda 1997). Most
African societies recognize descent through the male line (patrilineal descent) or
the female line (matrilineal descent) (Potash 1984). Hence, those who can
inherit land or property are related to the deceased by a common male or female
ancestor (Munalula and Mwenda 1984). Eighty percent of the ethnic groups in
Tanzania are patrilineal and guided by the patriarchal system (Mukangara and
Koda 1997). Areas in which matriarchy predominated in the past are leaning
towards a system of patriarchal beliefs. This change is due to "influences from
foreign religions, commercialization, and intennarriages with people from

patrilineal communities” (Mukangara and Koda 1997). A belt of predominately

35

matrilineal ethnic groups exists in the southern part of Tanzania. It is interesting
to note that the same belt of matrilineal groups extends across central Africa to
western Africa (Omari 1991).

Adepoju and Mbugua (1997) state, "in Africa it is the family as an entity -
rather than the individual members of the family - which defines the types of
adaptation mechanisms as well as the boundaries of adaptation parameters
employed by each member of the family". Studies tend to look at "households"
and "households don't always coincide with the family", the two are not
interchangeable (Adepoju and Mbugua 1997). Family includes the network of kin
who may or may not share a residence, and household refers to people that
share a residential unit.

The family may be defined in a more extended sense of "kin relations that
people may activate selectively, and which may include relations by descent and
by marriage (affines), as well as fictive kin” (Campbell 1995). Potash (1984)
states that African family ties “are based on the enduring, separate kinship ties of
husbands and wives”, and these ties commonly “take precedence over the bonds
of marriage”. Therefore, the African family can generally be characterized as a
consanguineal system in which domestic groups are based on descent, and in
which affinal ties have precedence over conjugal ties (Potash1984; Munalula and
Mwenda 1984).

Extended family in Tanzania may "either be living in the same compound
with different houses or the same house but having different and separate
rooms" or "living in different compounds where separate houses are built" (Omari
1991) The extended family is more common in rural areas and the nuclear family
in urban areas (Koda 1995). The membership of the family depends on the
context and purpose for which it is constructed (O'Donovan cited by Ncube et al.
1997)

36

Among patrilineal groups a man’s primary responsibilities may be to
support his mother, sisters and other kin rather than his wife and children (Potash
1984). Inheritance tends to vary among patrilineal and matrilineal groups. In
patrilineal groups in some cases inheritance goes to first and last sons, other
sons, nearest male relative, eldest brother, half-brother or eldest son of the first
wife (Mukangara and Koda 1997). In the case of divorce or death within the
patrilineal system, children are usually incorporated into the father's side of the
family. Children are considered property of men in the patrilineal system (Ncube
et al. 1997). Hence, the socioeconomic status of men and women from the same
family may differ greatly (Potash 1984).

When a male household head dies in a patrilineal society his eldest son
generally inherits his social position, land rights, cattle, and other possessions.
However, in some situations his possessions may be divided among other male
heirs such as other sons and brothers. It is common for daughters to inherit little
or nothing from their fathers, and wives to inherit nothing from their husbands. In
fact, wives and unmarried daughters are often themselves inherited by the sons
or brothers of the deceased. Thus, even after the death of her husband, a
woman may be considered to “belong” to the patrilineage that paid her
bridewealth (Davison 1997).

In matrilineal societies brothers or maternal uncles rather than husbands
are responsible for the support of their sisters and their sisters” children (Potash
1984). Among matrilineal ethnic groups, "the wife’s affinity may belong entirely to
her own clan or partly to her husband’s clan" (Mukangara and Koda 1997). The
wife or husband can chose to stay in their home after the death of the other, but if
she or he chooses to leave all property rights will be lost. Inheritance of land and
possessions in matrilineal systems commonly goes to the mother's brother or her

daughters; or the father’s sister and her children (Mukangara and Koda 1997;

37

Davison 1997). Children belong to the mother’s side of the family in matrilineal
systems (Potash 1984).

Family members, from the patrilineal or matrilineal systems, may attempt
to take the property of the deceased member such as “land, houses, cars,
clothes, money and cattle” without taking into consideration the welfare of the
family members remaining (Kayongo—Male and Onyango 1984). According to
Mukangara and Koda, both the patrilineal and matrilineal kinship patterns are
"heavily influenced by traditional socialization processes, ascribed gender roles,
ownership and decision-making patterns that are disadvantageous to women and
girls" (Mukangara and Koda 1997).

Patriarchal control patterns govern most households, especially those that
are rural, whether they be matrilineal or patrilineal. Men may control and
manage most agricultural resources including land, livestock, export crops, tools,
means of transport, and credit. Additionally, men often control earnings from
wage activities. Traditionally, in most patrilineal systems, property or land is not
inherited by the wife; although she may be granted usage rights over portions of
land which she is farming (Kayongo—Male and Onyango 1984). If a woman
becomes a widow or divorces she may lose access to the land allotted to her by
her husband (Davison 1997).

Residence patterns are important in determining the influence of the
extended family and the degree of economic independence or dependence of a
married couple in relationship to the extended family. In patrilocal systems,
residence is established near the husband's family; in matrilocal systems,
residence is established near the mother's family. The neolocal pattern of
residence is established near neither the husband's or wife's family (Kayongo-
Male and Onyango 1984). The martilocal system of residence benefits women in

that they remain in their own community in which they may have established

38

rights of land and property ownership (Potash 1984).
Importance of the Extended Family

Although the extended family system has been discussed in the previous
section, it is an important part of African life that warrants further discussion.
Kayongo-Male and Onyango ( 1984) claim that the “most significant feature of
African family life is probably the importance of the larger kin group beyond the
nuclear family". Members of the larger kin group often do not live near other
relatives. However, extended family members are connected by reciprocal
support obligations (Kayongo-Male and Onyango 1984).

Care and respect for the elderly are still very important in African families
(Kayongo-Male and Onyango 1984). Adult children have a traditional “obligation
to support their parents, grandparents as well as siblings and their children who
may be in difficult circumstances thereby making the membership of a family
nearly indeterminate” (Ncube et al. 1997). The supportive relationship may
change members from time to time and the flow of support will vary according to
circumstances. Familial obligations involve the sharing of “labor power and time”
(Ncube et al. 1997). The entry of family members into wage employment and the
subsequent migration out of rural areas changed “the reciprocal labor obligations
into money obligations for those people engaged in employment and therefore
unable to contribute the fullness of their labor to the family" (Ncube et al. 1997).

The extended family system in Africa, especially those in rural areas, is
viewed as a form of a social security system (Kayongo-Male and Onyango 1984).
The quote below from OchoIIa-Ayayo (1,997) summarizes the concept of

“harambee”; the ability of the extended family to operate as a system of support.

The concept of harambee at the household, lineage
and clan levels suggests that kinship ideology and
kinship systems of production, distribution and

39

consumption are more positive than any system
that could be introduced in Africa. The fact is, no
government will come to support an individual or a
household unit - the family - in time of need, but the
kinship network can do this and has done it.

Flexible family boundaries and an extended network of kin that can be
activated selectively may provide the means for families to survive in
economically harsh environments (Campbell 1995; Boss 1988). Flexible
boundaries of the extended family network are engaged during times of stress.
One such time is when deceased family members leave children with one or no
parent. Kayongo-Male and Onyango (1984) claim that according to African
customary law children who lost one or both parents “were actually in the custody
of an extended family unit, so that illness or death of parents simply entailed a
relative taking over responsibility for the child".

Orphaned children incorporated into the extended family are thought to
belong to everybody in the family system, meaning that anybody of adult age can
discipline them (Kayongo-Male and Onyango 1984). According to Ncube et al.
(1997), “changing social and economic conditions together with changing social
values have affected the traditional operations and functions of the extended
traditional family”. In recent years African society has experienced increasing
capitalist development which has in turn affected local forms of social
organization at the family and household level. Urbanization has altered the
manner in which kinship is constructed (Campbell 1995). Kinship will be
constructed in such a way that it will function within evolving circumstances.
Enabulele defines modernization as "those components, such as
industrialization, urbanization, education, economic development and the general
improvements which enhance the quality of life" (Enabulele 1993).

As stated previously, outward - systemic changes impact the family and

40

cause changes to take place within the unit. Modernization and the increase of
families migrating to urban areas are two such changes. An increase. in
modernization is "often accompanied by a decline in the functions of the familiar
group, similarly there is also a decrease in the social control exerted by this
group over its members" (Enabulele 1993). Thus, as families move into the
urban social environment they are exposed to more forms of modernization and
in turn make adjustments in their social habits to accommodate the requirements
of the new environment (Enabulele 1993).

Gender Based Care Issues

The poorest peasant is one without a wife —
An AIDS patient without a sister or mother is doomed (Obbo 1995).

The above quote highlights the role of women in production and nurturing
(Obbo 1995). It is on women that the burden of care for ill family members and
orphaned children falls. Therefore, it is necessary to look at the role of women
as caregivers within the family and to look at their access to resources needed to
fulfill this role. While we should question in what ways the familial system is
fragmenting or changing, we must also question in what ways the caregiving role
of women has changed and/or increased. It is women who bear the role of
caregiver and nurturer to their families, to the community, and to society at large
(Mbugua 1997).

It is imperative that an account "be taken of the status of women as the
main focal point of change" because "the problems encountered by women are a
reflection of the family's problems and an expression of its conditions which
cannot be understood in isolation" (Adegboyega et al. 1997). Therefore,
"questions must arise sooner or later regarding the extent to which the African

woman will continue to be the pillar of the African family, with all the stress that

4]

this entails, without herself breaking down" (Adepoju and Mbugua 1997).

Are the capabilities of women looking after an increasing number of
orphaned and sick children stretched to the breaking point? If so, what can be
done to strengthen her economic capabilities and decision making power within
the family and community? Part of securing a future for orphaned children
requires not only seeking to strengthen the family, but also taking a closer look at
the problem from a gender perspective.

AIDS and its impact upon families and individuals is clearly a gender
issue. Women and men are differentially affected by the disease, have unequal
access to resources, and will thus employ different coping strategies. It is
necessary to question in what ways a household copes in the face of insecurity
while taking into account gender inequalities (Laier et al. 1996). Two significant
areas of examination are: “what happens within the household and in its
immediate locality (e.g. actual food production, social relations underpinning
livelihood systems); and how external influences (e.g. access to land and other
inputs, macro-policy changes, state interventions) have differential impacts on
men and women” (Laier et al. 1996). In sum, can female family members
acquire needed resources in times of crisis?

Seeley et al states “there is a link between an individual’s lack of access to
resources and the economic strategies adopted to survive and to support a
family” (Seeley et al. 1994 cited by Akeroyd 1997). Given women’s role as
caregiver within the family, it is apparent that they play a key role in sustaining
the family in times of stress. Thus, men and women play different roles in the
process of coping due to culturally prescribed gender roles and resources
available to each (Laier et al. 1996). According to Laier et al. (1996), coping
options which women have to choose from “depend on access to kinship and

other social networks, common resources, particular types of migration, and a

42

range of gender specific forms of off-farm employment". Laier et al. (1996)
continues by stating that “key constraints on women's adaptive capacity are
linked to ownership of assets and access to income, community-based resources
and services provided by government and NGOs”.

It follows that female-headed households and women in male-headed
households tend to develop specific types of coping strategies in times of crisis
(Laier et al. 1996). Deaths of women are generally more problematic for families
than the death of men. The death of mothers is crucial, because as stated
earlier, the responsibility of child-care falls primarily to women (Bourdillon 1987
cited by McAdoo and Obi 1999). As women attempt to cope with the loss of
adult family members and the subsequent lose of labor, they may employ
children, especially girls, to help with household and agricultural tasks (Laier et
al. 1996). This strategy only provides an immediate solution. In the long run,
children are better able to become employed in wage earning positions, and
assist the family financially if they have obtained an education.

Turshen stated in 1999 that a greater number of women compared to men
were living in economically poor African rural areas. Tanzania is experiencing a
rise in single — parent households and also in the number of female-headed
households. The population of Tanzania consisted of 18.6% of female-headed
households in 1995. This occurrence is the result of “divorce, widowhood,
separation, or women deliberately deciding to have children of their own or failing
to identify the biological father of her children” (Koda 1995).

Women’s informal and family duties are broadening as poverty increases
and public services decrease. As a consequence of inadequate medical facilities
and support services women increasingly find themselves caring for ill relatives
and for the children of relatives who have died (T urshen 1999). In the absence

of government support services, more burdens are placed upon women to fulfill

43

the role of caregiver. These women may in turn look to extended family and
community networks for help in dealing with a crisis situation (Antrobus 1989;
Walu 1987 cited by Schoepf 1993). Additionally, these women may be sick due
HIV/AIDS and will eventually die; most likely passing on their burdens to another
woman.

Household coping and coping strategies employed by the community
usually mean a wider and wider circle of women will be called upon to assist in
caring for the ill and orphaned in the context of AIDS (Akeroyd 1997). The same
women who will be called upon in such a great time of need are the women who
“often lack access to cash, credit, land or jobs”, and “engage in activities in the
informal sector" in order to make a living (Schoepf 1993). Development and
policy planners add to the disadvantageous position of women by "explicitly or
implicitly" expecting them "to shoulder the burden” of caregiving (Akeroyd 1997).
Conclusion

What is certain is that the family has been in a constant state of change
both historically and geographically and, from this point of view alone, it is
evident that if we are to understand and meet the needs of the African family,
which is a constmct created from the interactions of many cultural and legal
sources, we need to explore it as broadly and widely as possible
(Ncube et al. 1997).

The Tanzanian family is a reflection of today’s reality. One may question
can the people of Tanzania hold on to their traditional coping mechanisms in the
present time? It is apparent that as the social environment changes it follows
that adjustments must take place at the micro level of family interaction. Thus, it
is logical to conjecture that traditional coping practices in Tanzania are bound to
change to some degree. The degree to which change occurs will depend on the
location, the way in which the individual family interprets their social environment,

and their access to needed resources whether they be material or human. The

preexisting societal construction of gender roles and the responsibilities attached
to those roles will dictate, in this case, which family and community members are

expected to care for the ill and orphaned.

45

CHAPTER 3
THE RISING NEED FOR FORMAL ORPHAN CARE MODELS

Indeed, Africa '5 youth face an uncertain future, a future for which they are
ill-prepared and bear no responsibility in the first instance and over which they
have little control (Adepoju and Mbugua 1997).

In the above quote are Adepoju and Mbugua referring to something more
than the uncertain conditions that African youth have always faced? What they
are referring to is the AIDS epidemic and its impact upon today's African youth,
and the effects it will have upon tomorrow's youth. The toll the disease has upon
youth internationally is not always apparent nor is it at the forefront of efforts
delivered by international agencies. There has been a great focus on what can
be done to prevent the spread of HIV/AIDS and to treat its victims, which is
necessary, but what about the survivors of the disease, many of whom are
children? What are the direct and indirect effects on children who are HIV/AIDS
infected and on those that are affected by the disease but not infected?

This chapter will examine the direct and indirect impact of AIDS upon the
lives of African children and their care environment. The chapter is divided into
five sections. The first contains an introduction to the issue of AIDS orphans.
The second examines what happens when a generation dies. The third looks at
the issue of taking responsibility for orphans and what options exist. Section four
explores formal care options from a feminist perspective and section five

concludes the chapter.

46

AIDS Orphans
Impact of HIV/AIDS Upon Children

Loss of family and identity

Psychosocial distress

Increased malnutrition

Loss of health care, including immunization
Increased demands for labor

Fewer opportunities for schooling and education
Loss of inheritance

Forced migration

Homelessness, vagrancy, starvation, crime
Exposure to HIV infection

Exploitation and exposure to violence

Gender differentials in impact

(The Status and Trends of the HIV/AIDS Epidemic in the World 1998)

This list illustrates the ways in which orphanhood may impact the lives of
African children. Most orphans are not HIV infected but are at high risk of
economic deprivation, a range of behavioral and developmental problems, as
well as engaging in high-risk behaviors associated with HIV transmission (Levine
1996). Various people have hypothesized about what will happen in Africa in the
not so distant future if the increasing number of orphans is not taken into
account. Okeyo (1995) claims that in urban areas orphaned children may turn to
the streets and become involved in roaming gangs. For example, the number of
street children in Lusaka, Zambia in 1991 was 35,000; by 1998 the number had
risen to more than 90,000 (Daley 1998). Daley (1998) asserts "the street
children here are like street children everywhere - hardened and focused on
immediate survival". As the number of abandoned children living on the street
increases the children will likely become involved in activities that will perpetuate
the spread of HIV/AIDS (McAdoo and Obi 1999).

Ninety percent of AIDS orphans reside in Africa and thus will end up

dealing with some or all of the aforementioned circumstances. As mentioned

47

previously, WHO estimates that 20% to 40% of children born to HIV positive
mothers will be infected, develop AIDS and die before the age of five. The
remaining 60% to 80% of children will not be HIV infected, but will be orphaned
within the first 10 years of their lives (AIDS Analysis Africa 1992).

While the previous list refers to the impact of AIDS upon children, the
crisis has been looked at in broader terms as well. Okeyo (1995) states that
"failure to tackle the orphan problem with the resources it deserves could see the
late 19903 and early part of the 21st century a period of economic disruption and
political turmoil in Africa". Hence, in the long run as a result of the death of the
middle parenting/working generation the work force will become younger, less
educated, and may have physical problems due to malnourishment as a child.
These circumstances will affect not only individual lives, but also the well being of
communities and countries as a whole.

What Happens When a Generation Dies?

Orphaned children are not a new phenomenon in Africa. Africans have
dealt with many children over the years whom were orphaned for various
reasons including famine, migration, and disease. Orphaned children were
usually absorbed into the extended family and not considered a problem. When
a crisis arises that leaves a child orphaned generally "the problem is discussed
by the family elders, and a family member, usually the father's eldest brother, is
assigned the care of the orphan" (SAFAIDS & CFU 1996). After this informal
decision-making process the orphaned child is raised as part of the father's
eldest brother's family where they may be taken care of by a grandmother or an
aunt (SAFAIDS & CFU 1996).

In Zambia, it was reported in 1998 that close to 75 percent of households
were taking care of at least one orphaned child (Daley 1998). As the AIDS

epidemic continues to take its toll on many African lives the family "undertakes

48

the long-term and time-consuming nursing of its stricken members, while AIDS
orphans also become the responsibility of the surviving kith and kin" (Adepoju
and Mbugua 1997). It is important to realize that families caring for kin who are
suffering from AIDS will feel the impact of their death long before it occurs. A
family member with AIDS will likely cause the family economic loss by not being
able to contribute to the workload and by requiring extra funds for care.

As a result of an increasing number of AIDS related deaths "we are seeing
the emergence of grandparent-headed and adolescent-headed households" that
"may be ill-equipped for the role" (Drew, Makufa, & Foster 1998). Surviving
relatives can become overwhelmed with the increase in the number of orphans
and fewer working-age adults in their family and community. Hence, kin support
networks that elders rely upon for economic and labor assistance may be
shrinking yet further under the current conditions (Kinsella 1996 cited by McAdoo
and Obi 1999).

Although the times may be tough, providing for orphans is still thought to
be the responsibility of grandparents (McAdoo and Obi 1999). Female fatalities,
especially those of mothers, are critical more so than male fatalities because it is
women who shoulder the main responsibility of childcare and child rearing
(Bourdillon 1987 cited by McAdoo and Obi 1999). When mothers are no longer
available the responsibility of childcare generally becomes that of grandmothers
(McAdoo and Obi 1999).

It is considered culturally appropriate for grandparents to assume
economic support of grandchildren in crisis situations. In fact, for a grandparent
to refuse to care for a grandchild is to "go against cultural convention" (Ocholla-
Ayayo cited by Weisner 1997). It is also culturally appropriate for the relationship
between grandparents and grandchildren to operate reciprocally (Ocholla-Ayayo

cited by Weisner 1997). The reciprocal relationship usually involves

49

grandchildren aiding grandparents with domestic tasks or income generating
activities. However, the reciprocal relationship cannot function if the child is too
young to assist in activities or if the child is sick because of HIV and/or
tuberculosis infection. In the case of AIDS, grandparents may be left with more
than one grandchild in their care and in turn may experience labor and economic
strain.

It is important to remember that normally the wealth flow is from children
to adults; parents and grandparents. Grandparents will lack support from an
adult family member or members if they are suffering from AIDS or deceased.
Thus, role overload may occur as grandparents assume the role of parent to one
or more grandchildren who may or may not be HIV infected. It is usually
grandmothers more so than grandfathers who are expected to care for
grandchildren (OcholIa-Ayayo cited by Weisner 1997). When these
grandmothers are no longer able to care for their grandchildren, or when they
die, what will happen (Campbell 1999)?

At times financially better-off extended family members of a "lineage are
obliged to share the benefits of their education or businesses by looking after
poorer relatives, either through substantial financial outlays or through
accommodating and sheltering them" (Adepoju and Mbugua 1997). The taking in
of children from other family members known as child fostering, is a common
practice in some African countries. Child fostering may be considered a
traditional coping mechanism by which better-off family members take
responsibility for one or more of their monetarily poorer relative's children and
sometimes non-kin children (Adepoju and Mbugua 1997).

The practice of child fostering gives children from poor homes the
opportunity to attend school and receive job training, while their foster parents

acquire assistance with domestic chores in return. In some African countries

50

there is little tradition of accepting non-kin as foster children. Biological parents
sometimes fear that their children will be neglected or abused by other families
(SAFAIDS & CF U 1996).

Children may be stigmatized and unacceptable for fostering if they are
from a family in which members were suspected to have died because of AIDS.
The extended family and community may fear contracting HIV/AIDS and/or
tuberculosis from the orphaned children whether they are infected or not.
Children are not often tested for HIV infection. The actual infected status of the
child does not matter, what is taken into account is their association with others
who were infected. This fear ties into lack of education on the transmission of
HIV/AIDS. According to Miyanda (WHO), lack of non-kin child fostering could
cause problems in the "future because of the way AIDS tends to devastate whole
families, particularly in villages" (Daley 1998).

Conventionally, the extended family assisted not only with the care of
orphans, but also with the survival needs of kin and non-kin in times of other
crises. Vaughan (1992) claims that as the effects of famine worsen traditional
familial and tribal reciprocal customs of helping break down; "increasingly each
family, and then each individual" tend only to their own needs. In other words,
families recognize that during escalating situations they must care for their own
immediate problems first and may not have the resources to aid extended family
members or non-kin.

Vaughan's famine analysis and other such analyses of crisis coping may
be applied to the AIDS epidemic. As the number of orphans increase, the pool of
"potential caregivers shrink" and "traditional coping mechanisms stretch to the
breaking point" (The Status and Trends of the HIV/AIDS Epidemic 1998).
Current health care systems in many African countries are unable to care for the

growing number of AIDS victims placing the responsibility on the family. The

51

increasing number of orphans is coming at a time when surviving relatives may
be financially unable to properly care for them (Adepoju and Mbugua 1997).

F urtherrnore, relatives might not take in orphans because they see them as
carrying the same disease that killed their parents and therefore will become a
financial strain without long-term benefits. The increased strain of caring for ill
family members and orphaned children may cause conventional support
mechanisms of the extended family to be near the breaking point. Families may
no longer have adequate resources to offer help to extended members let alone
non-kin.

Who is Responsible?

If the extended family's ability to care for orphans is lost, other forms of
care must be put in place. The question is to whom does the responsibility fall?
Should institutional and foster care programs such as those implemented in the
West and elsewhere be implemented in Africa? Are there other options to caring
for orphans and if so what are they?

As stated earlier, caring for orphans is not a new development in Africa.
What is new is the large number of orphans. Due to the "historical role of the
extended family there are few established institutions in Africa able and willing to
take on the task of caring for orphans" (AIDS Analysis Africa 1992). The family in
Africa has been perceived as the provider of a secure structure in which sick
family members and orphans could find refuge and support.

Recent literature has presented alternatives to family care of orphans. In
this chapter three alternatives to extended family care will be examined:
orphanage/child rehabilitation centers, foster care programs, and community-
based volunteer programs. All have been implemented to differing degrees by
various people in assorted countries of Africa. Each of these three methods of

orphan care are explored, an example of each given, and the strengths and

52

weaknesses of each pointed out in this section.
Orphanage/Child Rehabilitation Center

Missions located in Africa, in the past and the present, have at times
included an orphanage on their grounds. The structure may or may not be
referred to as an orphanage, but will operate as one all the same. These
facilities, sometimes referred to as child rehabilitation centers, also exist outside
of missions within various communities. Children usually come to be placed in
an orphanage due to abandonment, parental death, financial hardship or other
circumstances that leave them without family. Some children only remain in an
orphanage for a short time before members of their immediate or extended family
are able to care for them and retrieve them from the orphanage.
Example

The Mgolole Orphanage Home was founded in 1950 by the Roman
Catholic Missionaries of Morogoro, Tanzania. Today the facility still exists on the
grounds of the Catholic Mission just outside the city limits of Morogoro. In July,
1998, five sisters of the Roman Catholic Church cared for 37 orphans. The
orphanage is sponsored by the Catholic Church and received no outside funding
at that time. The Tanzanian government has not offered any funding since 1993.
The orphanage provides shelter, food, clothing, some medical care, and
schooling. In the case of parental abandonment or death, children are brought to
the orphanage by Morogoro hospital staff or by town officials. Sometimes
extended family visit their kin in the orphanage and will take them home when
they are able to care for them. The orphanage cares for both HIV infected and
non-infected children (Mkumbaye 1996 & 1998).
Strengths

Orphanages can help children who have no extended family or non-kin

from which to receive support. These facilities may be able to offer care in terms

53

of material needs that include shelter, food, clothing, and some medical supplies
(Drew, Makufa, and Foster 1998). Children can find a sense of security within
the shelter and companionship with other children. If the orphanage is well
funded the children will probably be able to attend school. Orphanage existence
is bound to increase the odds of child survival when compared to street
existence.

Weaknesses

Problems seem to arise when these facilities are unable to properly care
for children. According to Drew, Makufa, and Foster (1998) orphanages, "have
limited capacity and are very expensive to run and do not provide adequately for
other needs such as belonging to a community". Governments do not have the
financial resources to undertake a program of this kind. It was reported in 1992
that 70 children's homes existed in Uganda with a total capacity for 2,500
children. The Uganda Minister of Health, estimated that 50,000 children could be
orphaned annually (AIDS Analysis Africa 1992).

In 1992 in Zimbabwe, "orphanages in the province of Manicaland were
becoming overcrowded, leading to a mortality rate of 25% for children under one
year of age” (AIDS Analysis Africa 1992). Obbo mentions two instances in which
individuals solicited cash and supplies such as food, clothing, and medicine to
set up informal orphanages. Officials, after finding out about the orphanages,
reported that health risks came in the form of overcrowding, sharing of eating and
drinking implements and sharing of toilet outlets. Many of the children were sick
and had been given only small portions of food. Individuals attempting to run the
facilities lacked the experience to operate orphanages that could properly care
for children. Government officials did not have the resources to help with these
orphanages. However, the homes continue to operate with increased funding

from international NGOs (Obbo 1995).

54

Placing children in institutional care will put them at risk of stigmatization
when integrated into community settings, as well as causing them to develop
feelings of unwantedness, resentfulness, rebellion and could possibly lead to
delinquency (SAFAIDS & CF U 1996). Orphanages may not receive enough
funding to pay children's school fees, to supply nutritious food, and to adequately
staff facilities let alone staff them with trained workers. Additionally, staff may or
may not teach children domestic skills or other basic skills such as farming and
gardening.

Programs of this nature require a substantial amount of resources. Most
donor agencies are reluctant to fund comprehensive orphan rehabilitation
programs. They prefer to spend money on preventative programs that
disseminate information and/or educate the public. While these are useful
interventions, providing for orphans is also important and will in turn permit a
preventive message to be delivered to a high-risk population (Okeyo 1995).
Foster Care Prggram

Here I am speaking of a non-kin foster care system in which families
volunteer to care for unrelated children. These programs generally offer some
sort of incentive to the foster family in return for their taking one or more
orphaned children into their home. Some of these programs are operated by
NGOs and community-based organizations.

Example

A study on the foster care system for orphaned children on commercial
farms in Zimbabwe was undertaken in 1996 by the Southern Africa AIDS
lnforrnation Dissemination Service (SAfAIDS) and the Commercial Farmers
Union (CFU). The study found that the Departmwt of Social Welfare was unable
to offer financial assistance and no external support was expected to be available

in the future. However, the foster scheme on this particular farm continues to

55

operate, but greatly because of the farm owner's personal commitment to ensure
the care of the orphaned children by using their own financial input to supply
incentives for foster families (SAFAIDS & CFU 1996). Workers on this
commercial farm felt that the care of orphans "should ideally be through fostering
by relatives in the traditional extended family system, but where no relatives can
assist, fostering by non-relatives should be encouraged" (SAFAIDS & CF U
1996). The main concerns of farmers were sustainability of the foster program,
administration of the program, and risks of abuse of the scheme in the form of
exploitation of children (SAFAIDS & CF U 1996).
Strengths

According to Okeyo empowering "caregivers at community level would
ensure that rehabilitation of orphaned children could take place in their own
traditional extended family and clan environment. This would ensure psycho-
social stability of the children and enable them to inherit land and other property
of the deceased parent" (Okeyo 1995). Moreover, if community members, who
may or may not be members of the child's extended family or clan, are
economically empowered in the form of cash or other valuable incentive, the
orphaned child would then be able to grow up within the community.
Weaknesses

Here again a major problem is securing funds to be used as incentives for
foster families. Incentives do not necessarily have to come in the form of cash,
but might include "improved or extended housing, more land to grow crops, free
education for all children in the household and other benefits in kind" (SAFAIDS
& CFU 1996). Nevertheless, the problem of obtaining these incentives still
exists.

Another problem comes in the form of spiritual beliefs. Some groups in

Africa will not foster a child because they fear the ancestral spirits of the

56

deceased parents (SAFAIDS & CFU 1996). For example, related or unrelated
children are never fully assimilated into foster families in Tiriki, Kenya because of
the traditional belief that the "blood (masayI)" of the child will bring illness and
maybe death to the other children who are related to the foster parent (Sangree
1987)

Identifying the best-suited families to assume the position of fostering is
very important. Community members as well as foster families could show
resentment toward AIDS orphans, "both overt and subtle physical abuse and
neglect is common" (Baggaley and Needham 1997). According to Baggaley and
Needham (1997), orphans might "end up being used as a source of free labour,
and young girls may be forced to work as prostitutes". Daley (1998) asserts that
foster children might receive less to eat than the other children in the household,
may be the last to obtain material resources such as clothing, and could be the
last to attend school if they attend school at all. Concerns voiced by community
members include: foster children would lack discipline and supervision; foster
parents will invest in a child with schooling and care only to have the child taken
away by her or his biological family afterwards (SAFAIDS & CFU 1996).
Therefore, treatment of orphans and expenditures within the foster family should
be monitored.

Communmj' -Based Volgnteer Program

This approach involves volunteers identifying and regularly visiting

 

orphans within the local community. Volunteers provide material assistance and
encouragement. The community-based volunteer program channels material
assistance through volunteers, thus placing an emphasis on reliance of
community cooperation (Drew, Makufa, and Foster 1998). These programs are

generally initiated and/or supported by community-based organizations or NGOs.

57

Example

Drew, Makufa, and Foster (1998) mention a program in Zimbabwe known
as Families, Orphans and Children under Stress (FOCUS). FOCUS is a program
that supports community-based orphan initiatives in four rural sites of
Manicaland, Zimbabwe. It is administered by Family AIDS Caring Trust (FACT)
and supported by PLAN International. At each site volunteers from different
churches are identified. In most cases these are women, many of whom are
widows. They are provided with basic training that enables them to identify and
register orphaned children in the community. The most needy orphans are then
visited regularly. Material assistance has been provided and projects have been
started in each site to encourage self-reliance on the part of the children (Drew,
Makufa, and Foster 1998).

Strengths

The UNICEF representative of Kenya in 1992 suggested that an emphasis
be placed on community-based care for orphaned children (AIDS Analysis Africa
1992). Community members are in a position that allows them to identify
children who need assistance. According to Okeyo (1995), the empowerment of
caregivers at the community level will allow orphaned children to be cared for in
their community and possibly within their extended family. This would help
engender the social well being of the children and could also enable them to
inherit land and other property from their deceased parent/s (Okeyo 1995).

As mentioned previously in the foster care section, community members
are closest to and part of the situation, thus they are in the best position to
identify needy children, to monitor their situation, to offer encouragement, and to
get material support to them. Foster (1998) claims that "orphan support
programs can improve their situation substantially, by ensuring that at-risk

households are regularly visited, children's health is supervised, food

58

supplements and income generating inputs are provided and primary school
enrolment is maintained". Foster (1998) further states that community-based
orphan support programs allow orphans to be supported in a way that
"complements exiting coping mechanisms". This type of program tends to be
cost-effective because large numbers of orphaned children can be sustained
within their community (Drew, Makufa, and Foster 1998).

Weaknesses

Problems lie in the areas of recruiting volunteers and supplying housing
for orphans. Individuals with the willingness and time to volunteer for such
programs is difficult to find. The willingness of people to volunteer will probably to
some extent depend on the economic condition of the community. A community
volunteer in Zambia states "It is not that people are so cruel. But they have
nothing themselves" (Daley 1998). Transporting volunteers to children in rural
areas may prove to be difficult as well.

The literature on community-based volunteer programs in operation fails
to mention where the orphans reside. Therefore, I am left to wonder about their
housing circumstances or lack of such. I assume that the orphans assisted by
such programs live with extended family, non-kin, or in an adolescent headed
household. It is unclear if these programs are limited to orphans residing within a
household.

Women's Work

What these three programs have in common is, the caregivers are most
likely to be women. Caregiving is an overarching issue in the AIDS epidemic and
deserves much attention when examining the issue of orphaned children.
HIV/AIDS has been called the “woman’s disease” not only because women are
at risk of infection, but because they also fill the role of caregiver to the infected

(Bennett et al. 1996), and to children that are orphaned as a result of the

59

disease.

The impact of caregiving upon women has been the focus of very few
studies (Bennett et al. 1996). As mentioned earlier, it is usually women, a
grandmother, an aunt, or other female relative, who informally care for orphaned
children. This feminization of caregivers is mirrored in formal care programs.
Three important questions arise: 1. Are the women serving in these caregiving
positions well supported? 2. Are programs taking into account that it is women
that informal and formal caregiving tasks fall to? 3. Do women have a voice in
programs of this type?

Culturally, African women are defined as nurturers and caregivers. This
cultural role is reflected in both formal and informal caregiving circumstances.
Programs which focus on caregiving issues usually receive a minimal amount of
funding due to structural adjustment cutbacks in the social sectors.
Governments and international funders consider the care of orphans the family's
responsibility, which in turn becomes the responsibility of women. Furthermore,
women's work, which very often involves caring for children and other family
members, is discounted because it is a non-wage activity.

Caregiving, if examined from a feminist perspective, “fundamentally alters
the way caregiving is approached and solutions are formulated” (Hooyman and
Gonyea 1995). According to Hooyman and Gonyea (1995) “a feminist
perspective defines caregiving as a societal, not an individual, responsibility”.
Thus, caregiving does not necessarily have to be considered part of the female
role. Caregiving is the responsibility of the particular community in which the
need arises and society at large.

This issue will not go away by simple suggesting alterations in
programming; the issue of caregiving necessitates “basic structural changes”

(Hooyman and Gonyea 1995). As Hooyman and Gonyea (1995) suggest,

60

structural change “demands for gender equality and community responsibility as
well as the commitment to alter the process and manner in which public and
private lives are organized and conduct So, either the capacity and
capabilities of caregivers needs to be strengthened or a structural change needs
to occur in which the position and role of caregivers would be modified allowing a
broader spectrum of society to be held responsible.

Given the fact that structural change is slow to occur and immediate help
is needed with orphan care, it may be of highest priority to strengthen the
capabilities of those women already playing the role of caregiver to kin and non-
kin orphaned children. This process can begin by lending a voice to women in
the areas of decision making and program design. Women can say best which
aspects of caregiving programs work, which areas need improvement and more
support because they are the key players.

Conclusion

Details on orphan care programs are still emerging and it is unclear as to
which programs function best. Program effectiveness is sure to vary depending
on circumstances, location, and many other variables. However, something is to
be Ieamed from each case. One thing is clear, the overarching issue of
caregiving is one that requires a feminist approach. To ensure that programs
mentioned in this chapter function effectively is to ensure accountability and

support to a task labeled as women’s work.

61

CHAPTER 4
CONCLUSION: WHERE DO WE GO FROM HERE?

The recommendations arising from this thesis encompass two areas:
filling in research gaps and promoting program development. What can be done
by practitioners and scholars to improve the current care situation in East Africa?
In order to confront the impact of AIDS upon families and communities, and to
offer viable options for the increasing need of orphan care, it is important to
attempt some summary of practical implications arising from this thesis. Let us
examine the interlinking factors in the arenas of research and programming that
require attention. What is said here by no means exhausts the topic under
discussion.

There are four major areas that require more research to further identify
interlinking factors related to the subject of orphan care. Those areas are: 1)
More information is needed on the “primary needs of the various family
members" and on the identification of “where the critical stress points occur”
(Jackson and Civic 1994). 2) Detailed analyses of orphaned children and their
circumstances. 3) Further identification of conventional coping mechanisms that
may already be in use by families and individuals. 4) Existing helping programs
should be evaluated and monitored for appropriateness and effectiveness.

It is clear that the HIV/AIDS epidemic crosses national and international
boundaries. As in any effort to aid those outside of US boundaries, the first
question to be asked is: “Should we as Western practitioners and scholars
attempt to intervene in crises that occur outside of our local periphery?”. If the
answer is “yes”, then the second question becomes: “How can we begin to look
at a crisis such as HIV/AIDS and develop strategies to aid those in need?".

Emerging program issues that need attention cluster around two major

62

Emerging program issues that need attention cluster around two major
areas: sustainability and context. Okeyo (1995) claims that HIV/AIDS “is a new
epidemic with disaster implications that calls for a urgent co—ordinated global
response”. Connolly, in 1997, called the inactivity of the global community in the
last 15 years concerning the impact of HIV/AIDS on children “the black hole of
international development” (cited by Foster 1998). Carol Bellamy of UNICEF,
while speaking at the 12th World AIDS Conference, called for a “concerted global
effort" to help people become aware of the effects of HIV/AIDS (cited by Dispatch
Online 1998).

Filling in the Gaps: Research and Programming

The remainder of this chapter will examine specific research and
programming areas that require greater attention.
Description of Orphans

More detailed studies on orphans are needed. The number of orphans
created by current epidemics is reasonably well known. However, characteristics
such as age, gender; the impact on families according to locality and lineage;
paternal, maternal, double orphaning; and the conditions in which orphans live is
not well documented (Drew et al. 1998). Other questions that remain

unanswered include the following.

Do orphaned children from the same family stay in more than one location?
Is there a gender difference in treatment of children?

How do children feel about their care arrangement?

Do orphaned children attend school, lose inheritance rights, or keep in touch
with family if taken in by non-family members?

Are orphaned children treated as well as biological children?

How do child-headed households cope?

What factors lead to orphaned children being incorporated into kin or non-kin
families?

Better data collection on the direct and indirect impact of HIV/AIDS on

63

monitor the effects of the AIDS epidemic on children and families (Drew et al.
1998). More research in this area would enable communities to better define the
magnitude of the problem and to conceptualize viable options.

Family

It is imperative that research be undertaken on the factors that determine
if families are able to absorb orphans and how families as a unit deal with crisis.
What exactly is the influence of family and kinship relations on patterns of orphan
care? Jackson and Civic (1994) state “Careful analysis should be undertaken
before service intervention to reduce the risk of undermining existing coping
strategies”. This point is made in other literature as well. For example, Barnett
and Blaikie (1992), call for the development of policies that deal with the
“problem of how best to achieve care within and in relation to the community”.
This conjecture makes sense because the majority of HIV infected and affected
children live with their families and are cared for by various family members.
Therefore, supporting the family is of primary importance in order to strengthen
their capacity for childcare (Anderson 1990).

In an effort to stay abreast of the familial coping capacity it is essential that
households and communities be monitored. If “their present coping mechanisms
cease to be adequate” it is “important that these policies and programs do not
replace but build upon the experience of local people” (Barnett and Blaikie 1992).
Home-based care of orphans includes “improving the capacity of families,
guardians and the community to actively participate in the provision of required
care” (Grant 1991). Gathering data on familial coping mechanisms will ultimately
assist programs in this effort.

HIV/AIDS has altered family size, roles, and relationships (Campbell
1999). Program planners should recognize grandparents, single parents, and

adolescents as household heads. A two-parent household model cannot be

64

assumed. Foster (1998) states that a "large proportion of children indirectly
affected by the HIV epidemic are at risk of poor health as a result of being cared
for by alternative caregivers whose poor education limits access to information
about symptoms and treatment of active disease". Thus, programs should be
sensitive to the changing composition of the African household and examine the
child care habits of each.

Programs that aim to assist with childcare might need to re-evaluate the
household situation, and target not only mothers, but also grandparents and
siblings with educational programming. Moreover, elderly and adolescent
caregivers may be uninformed about the general care of HIV infected and
affected children. Support programs must be sensitive to the cultural patterns of
local people. Institutional support can only supplement, and not replace
community support of families.

OchoIIa-Ayayo (1997) asserts “Grandparents should be assisted
financially in their crucial role of raising unwanted children”. Furthermore,
OchoIIa-Ayayo (1997) suggests that “associations of grandparents” should be
formed at the local and district levels. These associations could be supported by
churches and other local organizations (OcholIa-Ayayo 1997). Similarly, Kilbride
(1986), mentions that local grandmother networks should be strengthened to
support their role as caregivers (cited by Kilbride and Kilbride 1990).

According to Chevallier (1992), only a small amount of “research has
been undertaken on the socioeconomic consequences of AIDS for families and
children, particularly in developing countries” (cited by Jackson and Civic 1994).
Jackson and Civic (1994) identify five areas of research that should be
undertaken on coping: 1) how do families perceive their needs, 2) what are the
particular crisis points in familial coping strategies, 3) identification of alternative

caregivers and providers within the family, 4) explore what types of services and

65

support would best assist families in coping, and 5) identify how families
experience AIDS and cope with the death of caregivers and providers, and the
ways in which cultural factors affect this. Additionally, it may be helpful to look at
each stage of familial coping from the point of illness of a family member until
sometime after her or his death.

When a husband dies often the family’s resources are depleted as a result
of funeral expenses and property removal by relatives of the deceased (Foster
1998). Perhaps, community-based organizations and NGOs could identify such
families before death occurs and help the family understand and prepare for the
death of their member. This is the best time to begin planning for the future of
the remaining family. However, planning may not always be an option. In some
African cultures planning for a death is taboo.

Programming

Research can play a major role in helping to identify interventions for
families and communities. What do helping organizations need to know and how
can researchers find out these things? To begin with, studies of the programs in
place should be implemented and their usefulness and appropriateness to
specific locations and situations should be evaluated. What impact do current
programs have upon orphans, their families, and communities? Detailed
information is needed on what arrangements such as foster care and community
care entail and what the definitions of each actually mean within specific family
and community settings.

Can researchers provide a model that will allow us to predict the
differential impact of HIV/AIDS upon families and communities, in which sections
of the community children will suffer, and which alternative care programs will
work best? For instance, what are the responses of communities to the

increasing number of orphans, and how do these responses in themselves

66

condition the course of orphan care (Vaughan 1992)?

Supportive programs, whether they be institutional or community-based,
should be carefully documented. For example, detailed information on children
enrolled in such programs, the parameters of the program, funding sources and
overall operations would be of great help to other communities and program
developers. Unfortunately, children’s circumstances have not been well
documented and evaluated, causing many programs to be based upon
assumptions that may or may not be true (Jackson and Civic 1994).

Short and long term follow-up of programs will allow developers to
evaluate the outcome of programs (Jackson and Civic 1994). Although it may
not be best to replicate program models in other locations; principles used may
impart an understanding as to how similar problems can be approached (HIV
lnSite 1998).

Local Knowledge: Participatory/A ction Research

Researchers should understand the reality and context of people's lives
and ground their research in it. There is a pressing need for researchers to aim
to benefit others with the data they gather, rather than contributing to a body of
knowledge that may be only accessible and understandable by other academics.
Research findings should be distributed to the community in written form and
presentation/seminar format. People need information, but they also need more.
They need information that offers practical application or insight into a problem.

Participatory research generally gives a better perspective into what the
community wants and needs and generates realistic action. A holistic approach
to research is needed that looks at the function of the community, its resources,
and its culture. Research in which outsiders and local people are equal learners
and teachers is needed to determine the situation of families and individuals

affected by AIDS and to respond to their situation in an appropriate manner.

67

It is important that planners value the knowledge of local people. Blaikie
et al.'s (1994) quote below illustrates this point.

Coping strategies of all kinds are crucial elements

in understanding vulnerability and designing
interventions which provide sustainable self-help
solutions to recovery and future disaster prevention.
Indigenous knowledge provides the basis for much
coping behavior, and patterns of coping interact with
official attempts at disaster prevention and mitigation.
Official relief and recovery practice pays little heed
to what the ordinary people do. The result is wasted
resources, squandered opportunities, and a further
erosion of coping skills.

WIthout an understanding of indigenous coping strategies, planners and
policy-makers may attempt to “make stereotyped responses” (Blaikie et al. 1994).
The variables of age, gender, and class will often cause differences in local
coping strategies. This fact, if overlooked, can cause a deterioration of coping
mechanisms already in place (Blaikie et al. 1994).

It is imperative to build upon local coping strategies and to strengthen the
efforts of local organizations (Blaikie et al. 1994). Linking family, community, and
institutional care efforts may facilitate improvement of each (HIV InSite 1998). A
participatory approach in which local people are involved in the planning and
implementation of programs will likely result in programming that is relevant to
the needs of a particular location and will disperse the burden among community
members.

Sometimes only predetermined services are funded by international
organizations. This can contribute to the institutionalization of children if the
funding is allocated to building Western forms of care facilities such as

orphanages or children’s rehabilitation centers. These types of facilities may not

68

meet the needs of the specific location, but be built nonetheless because donors
have contributed money strictly for that purpose (Ressler et al. 1988).
Lending a Voice to Children

The perspective of the community and individual families including both
adult and child members should be examined. The voices of children have
generally been silenced in studies. Their views about their needs, whom they
would prefer to live with if orphaned, and what they perceive as problems should
be taken into consideration. It would be helpful if studies were completed on
children who had been taken into various care situations.

Within the realm of international development, "issues affecting children
are often given less priority than those affecting adults directly" (Drew et al.
1998). Planners with notions of childcare stemming from the Western world may
promote institutional care without fully taking into consideration what children
prefer, the community location, and the community's economic condition and
culture. It would be advantageous for development planners to view each
situation locally and contextually, including not only local leaders in planning, but
also the beneficiaries of the program (Drew et al. 1998).

Policy makers should be sure to create policies and programs that
address the different needs of female and male orphans as well as addressing
the various ages of the orphans (The Status and Trends of the HIV/AIDS
Epidemics in the World 1998). Chambers (1997) calls for "baskets of choice"
rather than "packages of practices" from which beneficiaries can choose the plan
that best fits their needs.

Policy/Ethical Issues

Research should be undertaken that examines ethical and policy

questions including: "1) how can children be protected from the potential familial

exploitation that may accompany placement in a new home 2) how can practices

69

that make it difficult for female headed households to survive be changed 3) how
can children who must be cared for by someone other than family be treated in
ways that do not discriminate against them because of their own or their parents
HIV status 4) how should the short-term needs be balanced against the need for
sustainable programs" (Levine 1996). 5) how can policies protect orphans and
women from losing inheritance to other relatives (Daley 1998).

Cultural Sensitivity

...it does not pay in the long run to blindly copy foreign systems
of thought and then, without digesting them, seek to apply them
(Sunday Nation 1984 cited by Kilbride and Kilbride 1990).

As the quote above states, it does not pay to use pre-set programs without
taking a close look at the cultural context in which programs are being placed. It
is of great importance for donors and planners to remain sensitive to cultural
issues including the stigma associated with HIV/AIDS and the differential impact
of HIV/AIDS according to gender.

M

HIV/AIDS is compounded by stigma. Studies should examine the
Influence of stigma surrounding HIV/AIDS on people who are infected and on
those related to or associated with the infected. If it is known that a child has
been orphaned by AIDS the extended family, prospective foster/adoptive
parents, and even institutional facilities may not assist him or her because they
fear the child may infect other members of the family or other children in the
institution. Grant (1991) claims that “Children with AIDS are seen as a poor
investment because they are bound to die quickly”. More detailed data are
required on the ways in which orphaned children and their caretakers, informal
and formal, are stigmatized.

Planners and program developers should be aware of the stigma attached

7O

 

 

to HIV/AIDS and the ways it can impact the infected and caregivers. Preble and
Foumbi (1991) claim the “Unstable economic status of the African family, the
changes in family dynamics, the stigma associated with AIDS, and the fear that
orphans are themselves infected can contribute to the rejection of these children”
(cited by David 1997). Hence, grandparents and other family members may not
always be willing to take care of children orphaned by AIDS (SAFAIDS and FCU
1996 cited by McAdoo and Obi 1999). Likewise, workers in care programs may
exhibit fear in associating with those children. It should be taken into
consideration that some children may have tuberculosis or may be suspected to
have tuberculosis. Children in such a case may be doubly stigmatized.

M

Does HIV/AIDS have a differential impact upon women and men? Studies
thus far say it does. If we accept that men and women are affected differently by
HIV/AIDS, what are the implications for the care of orphaned children which
generally is the responsibility of women? Do care and support barriers exist that
specifically affect women and what can be done to diminish these barriers?

A person with HIV/AIDS may experience a break down in her or his social
relationships. Does gender make a difference in the social networks and social
support of people with HIV/AIDS? In Uganda, for example, it is reported that
women with AIDS may be abandoned by their partners, and may be left with no
means to support themselves (De Bruyn 1992 cited by Green 1996). Similarly,
the fact that most East African women have no inheritance rights is of great
importance for women who lose their husbands to AIDS and for orphaned
children who may not receive an inheritance (Preble and Foumbi 1991 cited by
David 1997). How do women survive when they lose their spouse to AIDS and
have children? What support networks and resources are available to female

heads of households who may be widowed with children and HIV infected

71

themselves? If the mother dies due to AIDS, what childcare options will the
father consider?

Researchers must keep in mind that family care and specifically, orphan
care, is considered the responsibility of women. Thus, informal and formal care
options should be explored from the perspective that caring affects the daily lives
of women. According to Farmer et al. (1993), the “impact of HIV/AIDS upon
women and families is highly interdependent with kinship, economic, and life-
cycle variables” (cited by Green 1996). Hence, the way in which AIDS impacts
women and men is directly related to how families handle stress and their access
to resources. Therefore, the societal and cultural position of the caregiver should
be taken into consideration when completing research on the care of orphaned
children (Farmer et al. 1993 cited by Green 1996).

It Is important for program developers to take into account that it is women
who undertake the role of caregiver to orphaned children both informally and
formally. Program development should be grounded in local experiences of
women rather than a predesigned package of assumptions and generalizations
imposed upon communities. McAdoo and Obi (1999) call for “more support for
the women of all ages, an acknowledgment of the extra burdens that are faced
by women and children, and the development of more supportive services within
communities”. It is essential for program developers to “start with women's
experience in order to better understand the difficulties they face daily in their
lives and to adequately meet their expectations and actual needs” (David 1997).

Access to resources often differs between men and women. Blaikie et al.
(1994) define resources as “the physical and social means of gaining a
livelihood”. Planners should take into consideration that access to resources is
based upon “social and economic relations” which include “the social relations of

production, gender, ethnicity, status, and age” (Blaikie et al. 1994). This clearly

72

points to unequal access to resources, with women who are key players in
orphan care, possibly lacking access to material resources and labor.

The affect the AIDS epidemic has upon family members is likely to change
over time. Access to resources may change as various family members fall ill
and die. Hence, a breakdown in access to resources may occur quickly (Blaikie
et al. 1994). Taking this into account, can planners design programs that will
assist family members obtain equal access to needed resources in times of
crisis?

While it may be true that women carry the primary responsibilities of
caregivers, it is important to not over look the part that men play in this role.
Climo (2000) makes an important point in his article about eldercare. He
explains that researchers must be careful not to overlook the role of men in
caregiving. He further claims that “incomplete descriptions or research that
focuses on women and excludes men serves to perpetuate low cultural
expectations for male caregiving” (Climo 2000). F urtherrnore, program
developers should aim to enable and motivate both female and male family
members to perform caregiving tasks.

Program Sustainability

The foremost problem with orphan care schemes tends to be
sustainability. The problem with program sustainability may come in the way of
financial funding, securing workers, and any number of other variables. For
example, a drop-in-center in Gweru caters to the needs of more than 22,000
AIDS orphans. Funding needed to build the center was $12 million (Herald
Reporter 1998). Governments are not prepared to supply the amount of funding
required to construct and maintain programs of this nature.

Okeyo (1995) states that there is a lack of global funds overall allocated to
AIDS prevention in Africa. Studies indicate that in 1995 "although more than half.

73

of the global AIDS cases are in Africa, only about 2% of global funds for AIDS
prevention are spent in Africa" (Okeyo 1995). If this statement still holds true
today, then it would be wise to advocate for a more balanced distribution of donor
funds to programs that are applicable and useful in the economic and social
context of Africa.

In regard to the limited government resources in East Africa, non-
governmental organizations are needed to play a major role in supporting
communities at the local level. According to Grant (1991) “Indigenous NGOs,
particularly women’s groups and youth groups should be encouraged to support
activities relating to community-based care”. There is a need for the
“coordination and collaboration” of NGOs “in order to maximize the use of
available resources” (Grant 1991).

It is important to remember that support for orphans must not only be
supplied by international donors, but also by community members who strive to
mobilize in ways that best suit their circumstances. NGOs and community-based
organizations must work together with local community members to secure
international donors and to identify and assist orphaned children. A concerted
effort that involves cooperation and action at all levels is needed.

lntemational organizations may or may not be fully aware of the increasing
number of orphans in the midst of the AIDS epidemic. Such organizations
should take this situation into consideration when allocating funds. According to
Okeyo (1995), many donor agencies focus their attention on intervention and
education measures when addressing HIV/AIDS. Although these measures are
worthy of donor funds, agencies fail to realize that today's orphans may well be
tomorrow's generation of street children who will be at high risk to HIV infection
and other medical problems as well as social problems if not adequately cared

for.

74

 

Donors should identify and fund programs that can best meet the needs of
each specific location. Effective programs should be documented and replicated
to other areas that can benefit from the same type of programming. The
community needs to feel that they own their particular orphan care program and
that they are contributing to it (The Status and Trends of the HIV/AIDS
Epidemics in the World 1998).

Conclusion

Words such as coordination, collaboration, and strengthen have been
used in this chapter many times, but what is really being done in research and
program areas to address the problem of HIV/AIDS and orphan care in Africa?
Have there been improvements in programming, are researchers attempting to
uncover issues that will aid families, communities, and helping organizations to
actively take part in planning for the increasing need for orphan care?

This literature review was not completely exhaustive. For example, I was
not able to obtain some articles published in African countries or papers
presented at recent HIV/AIDS conferences. However, the foregoing analysis
indicates that while some data on the topic under study exists, there continues to
be a need for more detailed current information on the aforementioned issues.
Furthermore, extensive data will not only lend a better understanding of the
changing family structure in Tanzania, but will also impart knowledge on methods
by which development agencies and community based organizations can better
supply aid and programming to orphans and families affected by the AIDS
epidemic.

Families should be studied in context taking a holistic approach to family
lives. More specifically, studies are needed that ground findings in the everyday
lives of women. Studies should examine the emotional and practical

responsibility of caring for the ill and orphaned and the societal role of women in

75

providing care as either low-waged support or as unpaid volunteers in community
health and social services (Kimoto 1998). According to Chafetz (1988) "As
researchers, it is our responsibility to investigate the contexts, both private and
public, to question the historical definitions of the caring role" (cited by Kimoto
1998).

It is my hope that more people will be led to action by the content of this
thesis. I intend to expand the examination of this topic in my dissertation
research. It is a problem of great magnitude that is worthy of much thought and
action. It calls for a deeper understanding of the disease, the people it affects,
and how we as academics and practitioners can alleviate the struggles and

suffering that are experienced in many forms in the lives of those it touches.

76

 

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