World Journal of AIDS, 2013, 3, 335-344
Published Online December 2013 (http://www.scirp.org/journal/wja)
http://dx.doi.org/10.4236/wja.2013.34043
Open Access WJA
335
Assessing the Relationship between Caregivers Burden and
Availability of Support for Family Caregivers’ of
HIV/AIDS Patients in Calabar, South East Nigeria
Ekaete Francis Asuquo1*, Josephine B. Etowa2, Prisca Adejumo3
1Department of Nursing Science, University of Calabar, Calabar, Nigeria; 2School of Nursing, Faculty of Health Sciences, University
of Ottawa, Ottawa, Canada; 3Department of Nursing Science, University of Ibadan, Ibadan, Nigeria.
Received September 16th, 2013; revised October 15th, 2013; accepted October 20th, 2013
Copyright © 2013 Ekaete Francis Asuquo et al. This is an open access article distributed under the Creative Commons Attribution
License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
ABSTRACT
Purpose: This study examined the level of burden and the extent of support on family caregivers of people living with
AIDS (PLWHA) in Calabar, South East Nigeria. Methods: A mixed method with cross sectional approach was used.
Purposive sampling technique guided the recruitment process and data collection methods included, semi-structured
questionnaires and focusing group discussion. 260 respondents participated in the study. The quantitative data were
mined with the aid of SPSS and the qualitative data were analysed with the aid of NVivo8 using thematic analysis. Re-
sults: Results indicated high level of burden with limited support to caregivers. A Chi-square value of 25.1 was ob-
tained at P < 0.05, suggesting a significant relationship between availability of support and caregivers burden. This rela-
tionship was supported by the themes of physical, social, emotional and financial burden for the caregivers. Similarly,
information on coping skills, emotional support, financial assistance and help with caregiving themes emerged for so-
cial support. Conclusion: In Nigeria, the burden of caring for HIV/AIDS patients has a remarkable impact on family
caregivers. This calls for the development of policies that can systematically address the needs of family caregivers in
order to ameliorate the negative consequences of caregiving for PLWHA.
Keywords: Family Caregivers; Caregivers’ Burden; Caregivers’ Support; People Living with HIV/AIDS (PLWHA);
Nigeria
1. Introduction
Providing care for a sick family member is a normative
role embedded in African culture. It is an age-long tradi-
tion of kindness, love and loyalty, which binds family
members together [1,2]. Family members therefore be-
come the principal source of informal long-term care to
an ill or disabled family member [3,4]. Culturally in Af-
rica, the criteria for selecting primary caregivers are
linked to sex, generation and geography [4] and near
kinsman or close relation from the nuclear family. These
roles are assumed without questioning and may be laden
with adverse consequences [5-7]. HIV epidemic has be-
come a major public health challenge of our times and its
impact engulfs all sectors of our life including homes
[8-11]. Global effort has been directed to tackle this pan-
demic and to reduce its prevalence in which it is no
longer a public health issue. While this effort has led to
advancement in medicaltreatment and improvement in
life expectancy, increasing numbers of people are living
with chronic illness and disabilities. And this has a det-
rimental effect on family members who assume caregiv-
ing role and bore the brunt of taking care of those with
chronic conditions including the HIV epidemic. This is
particularly problematic in sub-Saharan Africa where
they are 22 million cases (69%) [12]. A synergistic rela-
tionship exists between high prevalence of HIV and the
demand for health care services and also has a burden on
both formal and informal caregivers [13]. Hence HIV’s
burden transcends the health care system to families and
friends who are without appropriate sensitization and
educational preparation to take up the caregiving role to
meet the health need of their family members [5,6,14-16].
*Corresponding author.

Assessing the Relationship between Caregivers Burden and Availability of Support for Family Caregivers’ of
HIV/AIDS Patients in Calabar, South East Nigeria
336
This is a significant contribution by the informal care-
givers who form the backbone of health care system
round the world [17,18]. Most often, they remain hidden
and their contribution to care receivers is unrecognized.
Studies revealed that caregivers experience negative
physiological, psychological, behavioral as well as fi-
nancial consequences of caregiving [5,6].
Burden of Care
The Nigerian health care system is based on the implicit
assumption that, family members are available to provide
care in the homes to the dependent ill, the elderly, physi-
cally and mentally disabled member. Previous report in-
dicates that caregivers are increasingly being required to
perform complex tasks similar to those carried out by
paid health or social service providers [3]. Therefore the
extent of care provided by these care givers covers mini-
mal assistance with activities of daily living to complete
care of a debilitated patient. These care are complicated
with the chronic pattern of exacerbation and remission
associated with HIV/AIDS, which depends on the care-
givers appraisal of the experience that may produce high
level of burden [15,19,20]. Caregiving stress model iden-
tified the stress process including the background, stress-
ors, mediators and outcome [21]. Agreeing with these
assertions, other authors [22,23] declared that factors
which influence burden include the characteristics of
caregiving context such as duration of care, extent of
social support and quality of family relationship, charac-
teristic of the caregiver and characteristic of the care re-
ceiver. This perceived stress was identified as caregiver’s
burden [24] in reference to inconvenience associated
with caring for mentally ill relatives and later conceptu-
alized as the degree to which the emotional, physical
health, social life, and financial status of a caregiver has
been impaired as a result of caregiving [25]. This con-
ceptualization is used in this study as the degree to which
life’s tension is expressed to depict the physical, emo-
tional, financial and social challenges associated with
caring for PLWHA.
The high level of burden experienced by the caregivers
may notably have produced negative consequences
which are manifested as symptoms of anxiety and de-
pression and induced changes that could lead to heart
disease, hypertension, psychological worries, loneliness,
increasing rate of physiological illness and suppressed
immune responses. Others include reduced engagement
in preventive health behaviors, social problems, etc.
[4,5,15,16,26,27]. It is important to note that the task of
caregiving is not only stressful to the family care giver,
and it has a serious impact on the patient quality of life.
A correlation has been found existing between the level
of burden and quality of life of the care receiver [5,7].
2. Support to Caregivers
The pattern of HIV occurrence has been classifiedinto
four phases namely onset, course, outcome and degree of
incapacitation [28]. Utilizing this typology, HIV has a
gradual onset with a long term stress on the patient, the
course is progressive with symptoms which increases in
severity. As disabilities become progressive with less
periods of relief, the patients and caregivers are rendered
psychologically, socially and physically disabled [28,29].
The level of burden experienced by caregivers differ de-
pending on degree of incapacitation of the recipient
[28,30].
The need to support caregivers of PLWHA for contin-
ual adaptation to task changes become imperative since
the perceived goal is to reduce burden of care on care-
givers. The conceptualization of social support is viewed
as coping assistance or the active involvement of signifi-
cant others in the caregivers ability to manage stress [31].
This is the concept utilized in this study. The significant
others may be family, community members or friends,
and occasionally professional institutions’ help may be
required from time to time [28]. The help rendered by
significant others enhances coping ability as it satisfied
the need for attachment, relieves stress, and boosts a
sense of self-worth, trust and life-direction [32-34]. The
burden associated with caring for PLWHA differs from
caring for someone with cancer or other debilitating dis-
eases, since HIV involves social isolation, contagion and
stigmatization, hence caregivers are emotionally laden
with high level of burden. Adequate support is needed to
encourage and prepare caregivers to express hurt, anger
and fear before taking up caregiving role. Burden of care
can be ameliorated by factors such as support from other
family members, the ability to use problem-focused cop-
ing strategies and availability of support from the com-
munity [32]. Other factors include the provision of in-
formation and advice, participation in social activities
and help from caregiving and emotional support [35-37].
Provision of information for coping with stress and deal-
ing with emotions are important areas where caregivers
may require help [33,38,39]. On the other hand burden
can be worsened when the people involved are socially
isolated, less knowledgeable about the condition or have
limited interpersonal skills. This study therefore assesses
the burden of caregivers, availability of support and
proffers the appropriate intervention measures as a pana-
cea for delivering efficient quality care to the patients
and wellbeing of caregivers.
3. Materials and Methods
Location of the Study
The study was carried out in Calabar Municipality of
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Assessing the Relationship between Caregivers Burden and Availability of Support for Family Caregivers’ of
HIV/AIDS Patients in Calabar, South East Nigeria
337
Cross River State of Nigeria. Calabar is located at the
extreme end of southern eastern Nigeria between latitude
4˚58′ North and longitude 8˚17′ East. Calabar Municipal-
ity host the University of Calabar Teaching Hospitals (a
tertiary institution) which acts as referral center to pri-
mary and secondary health care facilities in the state. It
has been selected by the Federal Government of Nigeria
as one of the centres for the management of people living
with HIV/AIDS. The study was informed by the high
HIV prevalence of 10.4% [40] at the study site.
4. Methods
Study participants constituted a convenient sample of
260 caregivers who were primary caregivers to PLWHA
between June and December 2009. Participants were
identified through HIV clinic of the University of Cala-
bar Teaching Hospital and visitation list of a voluntary
caregiver of PLWHA, an NGO (Positive Development
Foundation, Calabar, Nigeria). Inclusive criteria were:
being a caregiver for more than one month and also car-
ing for PLWHA patient with some functional abilities as
a family member. A total of 299 potential caregivers met
the inclusive criteria of being primary caregivers, but
only 260 completely filled their questionnaires, 11 care-
givers did not know the diagnosis of ailment of their care
receivers. Twelve (12) refused to participate while 16 did
not complete their questionnaires. Two sessions of focus
group discussions were also used to encourage self-dis-
closure among the participants [41] and to complement
findings from the questionnaires. Being a primary care-
giver involved participants who provided unpaid physical
support such as helping in activities of daily living,
shopping, food preparation, helping in administering me-
dication, overseeing medical appointment, financial, and
emotional support to PLWHA. The study was submitted
to the University of Calabar Teaching Hospital Ethics
and Research Committee, who gave the approval for con-
ducting the study. Consent was also obtained from the
Managing Director of Positive Development Foundation.
Informed consent was also obtained from study partici-
pants following full description of the aims and objec-
tives of study.
Caregivers Burden. The Zarit Burden Interview scale
questionnaire, semi structured questionnaire on social
support and focus group discussion were the main in-
strument for data collection. Zarit Burden Interview (ZBI)
scale made up of 22 items was used to measure the level
of burden. This scale reflects the degree of emotional,
physical health and social impact of caregiving on care-
givers while caring for PLWHA [42]. The respondents
indicated the discomfort they experienced of particular
items on a 5-point Likert scale ranging from 0 - 4. The
total score ranged from 0 to 88 and a high score corre-
lated with higher level of burden. The psychometric
properties of Zarit Burden Interview scale had been ex-
amined in many studies with an estimated internal con-
sistency reliability of Chronbach’s alpha ranges of 0.88
to 0.92 [43]. The social support questionnaire consisted
of 12 items on a 4-point Likert scale assessing the avail-
ability of support on Information, financial help, help
with caregiving and emotional support available to care-
givers’. The questionnaire was translated into Efik (the
native language of the people) and back-translated into
English by experts to ensure that there was no lost of
meaning. The Efik version was administered to caregiv-
ers with little or no education. The NGO (Positive De-
velopment Foundation) provided the forum for three fo-
cus group discussions with about 8 to 10 participants at
each session. A total of 27 caregivers participated in the
focus group discussion after having completed the ZBI
and social support questionnaire. Focus group discussion
as an assessment tool involves an organised discussion
with a selected group of individuals to gain information
about their views and experiences on a topic [44]. It has
the advantage of creating greater room for spontaneity
and participants feel supported and empowered within
the acuity of the group and its cohesiveness [45].
Data Analysis
Data collected were analyzed using the Statistical Pack-
age for the Social Sciences (SPSS 16.0) software to gen-
erate the frequency and percentages of the values. By the
application of inferential statistics (Chi-Square test), the
level of significance was also determined at the P-value
of 0.05. For level of burden, scores ranged from 0 to 88.
Zero to twenty (0 - 20) represented little or no burden, 21
- 40, mild to moderate burden; 41 - 60, moderate to se-
vere burden and 61 - 88, severe burden [46]. Thematic
analysis was used for assessing the focus group discus-
sion sessions [47]. Sixty five (65) codes emerged which
were developed into 4 basic themes namely physical,
social, emotional and financial burden, which provided
impetus for understanding the level of burden experi-
enced by the caregivers. Four basic themes namely pro-
viding information on practical and coping skills, finan-
cial assistance, help with caregiving and emotional sup-
port emerged as caregivers support needs.
5. Results
In this study, the demographic variables and level of
caregivers burden are presented as frequency, percent-
ages and ranges. Table 1 shows the socio-demographic
characteristics of the respondents. The majority of the
respondents were females 199 (76.5%) while 61 (23.5%)
respondents were males who voluntarily took up the care
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Assessing the Relationship between Caregivers Burden and Availability of Support for Family Caregivers’ of
HIV/AIDS Patients in Calabar, South East Nigeria
338
Table 1. The Socio-demographic data of respondents (N =
260) in Calabar Municipality, Nigeria.
Variables Frequency Percentage (%)
Sex
Male 61 23.5
Female 199 76.5
Age (yrs)
10 - 20 22 8.5
21 - 30 30 11.5
31 - 40 51 19.6
41 - 50 90 34.6
51 and above 67 25.8
Educational Qualification
Primary 15 5.8
Secondary 112 43.1
Tertiary 111 42.7
Never been to school 22 8.5
Household Income Level US$*/Day
Less than $6.00 130 50.0
$7.00 - 8.00 59 22.7
$9.00 - 10.00 25 9.6
$11.00 - 12.00 18 6.9
$13.00 - 14.00 13 5.0
$14.00 and above 15 5.8
Number of People in the Household
1 - 3 19 7.3
3 - 6 153 58.9
7 and above 88 33.8
Duration (Hrs/day)
3 - 8 Hrs/day 52 20
9 - 12 Hrs/day 162 62.3
13 - 24 Hrs/day 46 17.7
Duration (Yrs)
Less than 1 year 101 38.9
Between 1 - 2 years 109 41.9
Between 2 - 3 years 38 14.6
Above 3 years 12 4.6
*1 US$ = N 164.00 (Nigerian Naira).
giving roles.
Majority respondents, 90 persons (34.6%) were in the
age class of 41 - 50 years. This age class was closely
followed by 51 years and above comprising of 67 indi-
viduals (25.8%) and the teenage class of 10 - 20 years of
22 (8.5%) respondents. The highest educational qualifi-
cation attained by most respondents was secondary edu-
cation with 112 (43.1%) respondents followed by 111
(42.7%) respondents with tertiary education. Other char-
acteristics of the caregivers are as shown in Table 1.
6. Level of Burden on Caregiving
Generally, the results revealed a level of burden ranging
from 14 - 71 on ZBI Scale (Table 2). 49 (18.8%) ex-
perienced no burden while providing care, 67 (25.8%)
respondents experienced mild to moderate level of bur-
den, 93 (35.8%) experienced moderate to severe level of
burden while 51 (19.6%) respondents experienced severe
level of burden in providing care to PLWHA.
Focus Group: The extent of burden expressed fol-
lowing discharge from health care institution was catego-
rized into four basic themes namely physical, social,
emotional and financial burden. Carers generally per-
ceived caring for PLWHA to be very stressful as they
reported that their tasks ranged from simple to complex
and covering all the “activities of daily living” such as
putting care recipient to bed and getting up, bathing,
dressing, toileting and coping with incontinence wors-
ened during period of exacerbation, preparing food, giv-
ing medications, providing financial assistance, and emo-
tional support like keeping company especially when
care recipient is depressed. These activities left them
with aches and pains, and fatigue and exhaustion were
regular experiences in their life.
Physical Burden: Caregivers generally express that
they experience extreme fatigue as they indulge in day to
day caregiving. Caregiving to them is very challenging
and produces ill effect on their physical health. The
physical ill effect of caregiving as perceived by the care
givers include fatigue and exhaustion “you keep doing
one task to another and no rest period, even some nights
Table 2. The distribution of caregivers burden on Zarit
Burden Interview scale (ZBI).
Level of Burdens n = 210 % Range
No Burden 49 18.8 0 - 21
Mild to Moderate Burden67 25.8 21 - 40
Moderate to Severe 93 35.8 41 - 60
Severe Burden 51 19.6 61 - 88
Total 260 100 0 - 88
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Assessing the Relationship between Caregivers Burden and Availability of Support for Family Caregivers’ of
HIV/AIDS Patients in Calabar, South East Nigeria
339
become day because it is pack filled with activities”.
Some expressed the feeling of being trap to responsibility,
“I just can’t ignore him as other members of our house-
hold do, it becomes my responsibility and mine alone as
the wife”. The stress experienced enhances discourage-
ment and helplessness. Reports of physical ailments such
as continuous waist pain, “I have been lifting him for
bathing, but as the waist pain persist if no help is avail-
able I bath him in bed”. Other physical effects include,
weight loss, headaches and many lack the energy to face
another day. With reference to their perceived health
status, the discussants generally agreed that their health
had suffered as noted “I used to be plum, but since I
started caring for her, I’ve lost weight and I don’t have
sufficient time to care for myself, and some friends ask
me, are you sick? I really know that this work has af-
fected me.” Another reported that she is now diagnosed
of having hypertension which she attributed to excessive
worries due to caregiving. Most discussants revealed that
burden of care increases during period of exacerbation.
One said “I suffer most when he has diarrhea, the wrap-
pers (native African wear around the waist down to the
knee) are not enough, you keep washing and reusing, he
is weak and frail, I am caring for him and many other
things I have to do to make ends meet. At the end of the
day I feel drained, tired and worn out”. Some narrated
that burden also increased when the care receiver exhib-
ited some abnormal behavioral symptoms, a situation
which demanded continuous supervision coupled with
providing care. “I can cope with bathing and feeding or
anything else but when he starts talking to air, becoming
very suspicious of everybody and acting abnormal, I
feared for my life and that of others in the house”.
Emotional Burden: During the FGD sessions, parti-
cipants raised some issues which impacted them emo-
tionally such as being unduly irritable, fear of the un-
known, guilt and fear of being susceptible to HIV
through caregiving. Most of the discussants revealed that
the burden has influence their emotional wellbeing as
they become unduly irritable and used aggressive words
when provoked, which were later regretted. This was
portrayed by the words of a female caregiver who said “I
slapped my child who insisted that I should be at the
school’s parent teachers association, there was no rea-
son for that for God sake no reason. I felt disappointed
by my action and I started crying”. Another reported, “I
woke up some days feeling depressed and afraid of what
the day holds, and on such days, tears flow freely from
my eyes”. Another reported, “sometimes I get annoyed
and upset when others are laughing, and I often won-
dered what is good about life that thrills their heart”.
Fear of the unknown has been a serious trait to caregivers,
as most of them harbor anticipatory grief about the im-
minent death of their sick relative especially knowing
that HIV has no cure. This fear is common especially
when the care receiver is a bread winner. A woman said
“when my husband is dead (sick relative) and the pension
stop coming in, what will become of the family”. Some
felt already susceptible to HIV through caregiving and
some felt stigmatized as HIV positive. Caregivers were
generally committed to the care of their relatives with
some strong emotional ties which would produce guilt if
they should leave the caregiving role, “We’ve been mar-
ried for 30 years although the last eight years was noth-
ing to write home about, but he is my husband anyhow”
another added “he is my only son I will always love and
care for him”.
Social Burden: Social groups provide companionship,
support and a feeling of togetherness which has a posi-
tive effect on caregivers’ health and well-being.
Some discussants feel isolated from their social group
due to lack of time for such functions or due to poor self-
esteem. Some reported reduced time spent on self,
spouse and children. A discussant reported feeling un-
comfortable especially when they had a known visitor. “I
just felt they may be thinking I am also HIV positive”.
Another retorted, “It’s like falling from grace to grass,
and your self esteem is gone”. Another remarked “Myboy
friend called it quit when he found out I was caring for
my brother who had HIV”. Some wished they could
leave the caregiving role to someone else, one caregiver
complained “but who do you leave it to”.
Financial Burden: The financial burden of caregiving
is a significant aspect that worsens caregiving experience
especially in low and middle income countries such as
study setting where most individuals live below one dol-
lar per day [47]. Most carers revealed that this aspect is
an issue as it influences the administration of drugs and
other activities such as school fees for children and gen-
eral family upkeep. Sometimes children drop out of
school taking to hawking as a way out. Even with those
who chose hawking as a remedy, discrimination and
stigmatization takes its toll on their ability to sell their
farm products where they are known. A discussant nar-
rated “my children started hawking to make ends meet
because I couldn’t pay for their secondary education any
more”. Another said, “I had to hawk my farm products
away from home because neighbors won’t buy from us”.
Another discussant reported, “We sometimes suspend
giving drugs until when food is available, since he can-
not take drugs with empty stomach. Although we are
aware that this is not right but what can we do when
there is no money to buy the food”. Generally, they
agreed that lack of money was a serious constraint to
caregiving although some agreed to some level of finan-
cial support from Church and NGOs.
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Assessing the Relationship between Caregivers Burden and Availability of Support for Family Caregivers’ of
HIV/AIDS Patients in Calabar, South East Nigeria
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340
6.1. Availability of Support to Caregivers 6.2. Financial Assistance
The availability of support was categorized into four sec-
tions namely: providing information on practical and co-
ping skills, financial assistance, help with caregiving and
emotional support (Figure 1). Among the 260 respon-
dents, 152 (58.5%) agreed to have received some form of
support while 108 (41.5%) received no form of support
at all. The form of support received include: 6 (0.2%)
information on practical and coping skills, 36 (13.9%)
financial assistance, 72 (27.7%) help with caregiving and
38 (14.6%) emotional support. Most caregivers perceived
their role to be extremely stressful with adverse conse-
quences on their health, which some form of support
from individuals or government could have helped to
ameliorate.
All caregivers unanimously express the need for financial
support as recipient disease condition had impinged on
the family resources. Even caregivers who had some
form of financial support felt it was not enough. A care-
giver expressed “not just giving money from time to time,
I wish the governmentcan employ one of my children, it
will help make life easy for us”. Coping strategies varied
among the caregivers which included children dropping
out of school to hawking, begging and other subservient
means of survival as a way out.
Help with Caregiving: Most care givers expressed
that they needed a break occasionally from providing
care and a relief period would have cushioned the effects
from both physical and mental stress of caregiving. It
would also foster social relationship and alleviate feel-
ings of isolation. “I know if I had the time I would be
going to church more often and something would have
been said to help me. But it seems this work is my sole
responsibility, no time for what I want to do for myself”.
Providing Information on Practical and Coping
Skills: Majority of discussants revealed that they had no
prior information from hospital staff on how to care for
recipients. Their knowledge and skills on care came from
trial and error and past experiences based on previous life
situations. Many wished they had training to assure
themselves they were providing the right care “I wish I
was trained, nevertheless I just do all I can for him, if
this did not work, I try something else”. The caregivers
generally wished they had training to assist them in deci-
sion making and problem solving relating to their roles.
The fear of stigmatization also prevented some from
seeking advice from some support staff. The forum pro-
voked negative feeling when some learnt about the
foundation that supported PLWHA and available ser-
vices. Although the foundation had their own challenges
such as number of people that volunteered to provide
care for PLWHA, information regarding recipient health
conditions and their implications coupled with how to
prevent contagion through caregiving was also identified
as areas that required attention.
Emotional Support: Throughout the focus group ses-
sions, group members expressed anticipatory grief about
the sad end of their stressful endeavor. Always probing
to know if early death was still inevitable with drugs.
Fear of susceptibility to HIV was also raised which com-
pounded caregiving role. The need for counseling ser-
vices was identified to help in eradicating fear and anxi-
ety associated with caregiving.
The relationship between availability of support and
caregivers’ burden was also evaluated. Out of 152 re-
spondents that had received some form of support, 37
experienced no burden, 44 respondents experienced mild
to moderate burden, the majority, 56 respondents ex-
perienced moderate to severe burden while 15 respon-
dents experienced severe burden (Table 3).
Out of 108 respondents that received no support, 12
Information on
Practical skills
Financial
Assistance
Assistance with
Caregiving
Emotional
Support
N
o form of
Support
6
120
100
80
60
40
20
0
No. of Respondents
36 38
72
108
Figure 1. Bar chart showing the extent of support to caregivers of PLWHA in Nigeria.

Assessing the Relationship between Caregivers Burden and Availability of Support for Family Caregivers’ of
HIV/AIDS Patients in Calabar, South East Nigeria
341
Table 3. The relationship between availability of support and caregiver s’ bur den.
Availability of Support No Burden Mild to Moderate BurdenModerate to Severe BurdenSevere Burden Total
Received any form of support 37 (28.7) 44 (39.2) 56 (54.4) 15 (29.8) 152
Received no support 12 (20.4) 23 (27.8) 37 (38.6) 36 (21.2) 108
Total 49 67 93 51 260
Figures in brackets are expected frequencies. X2 Cal. = 25.1. X2 Tab. = 7.81, DF = 3, N = 260, P > 0.05.
experienced no burden, 23 respondents experienced mild
to moderate burden, the majority 37 respondents experi-
enced moderate to severe burden while 36 respondents
experienced severe burden. A Chi-square value of 25.1
was obtained at P < 0.05, which showed a significant
relationship between availability of support and caregiv-
ers burden (Tabl e 3).
7. Discussion
The improvement in technology and the discovery of
anti-retroviral drugs (medical innovations) have in-
creased the longevity of PLWHA and turned HIV into a
chronic ailment, which has apparently increased the bur-
den of home caregivers. Many caregivers expressed dis-
tress about the consequences of caregiving on their gen-
eral health as revealed in this study. Majority of the care-
giver’s experienced moderate to severe level of burden
which suggests partial or complete reliance of most care
receivers (PLWHA) on the caregivers for their physical,
financial, emotional and social support especially during
periods of exacerbation of HIV symptoms. This observa-
tion is similar to previous report [28] who asserted that
HIV has a gradual onset with a long term stress on the
patient, the course is progressive with symptoms which
increases in severity, and as disabilities become progres-
sive with less periods of relief, it renders the patient and
caregivers psychologically, socially and physically dis-
abled. Therefore the level of dependency is related to the
functional abilities of the care recipient. The lower the
functional abilities the higher the level of burden per-
ceived by the caregiver. This also corroborates with the
findings by others in different locations [5-7].
Further study [48] revealed that informal caregivers
experienced a lot of stress while caring for recipient and
remains a valuable asset to the recipient for their quality
of life. Major caregiving problem emanate from carers
ability to cope with the increased needs of the care re-
ceiver as a result of physical and/or mental illness [49].
Although this finding was contrary to the situation in
Canada [50], PLWHA relied more on similarly disad-
vantaged peers and formal caregivers for support hence
there was no increased level of burden on family mem-
bers. The differences in this study could also be attrib-
uted to cultural expectations especially in Africa, where
the provision of care for a sick family member is an age-
old act of kindness, love and loyalty [1] which bind fam-
ily members together in most African societies.
The high prevalence of HIV in sub-Saharan African
has depleted financial resources of many who cannot
afford funds for health care [51]. This study revealed that
the majority of the caregivers daily earning was low (Ta-
ble 1), in conformity with previous observation by WHO
[52]. Though this study did not assess the correlation
between burden and quality of care, it is important to
know that the quality of life of the care recipient depends
on the quality of care provided, and the high level of
burden has a detrimental effect on the caregiver and a
direct effect on quality of care receiver [5,8].
The demographic characteristics of caregivers were
also significant in this study as it portrayed the cultural
norms of the African society such as women’s role being
associated with primary caregiving in the society. Similar
finding [26] revealed that within the complex system of
long-term care, women’s caregiving is essential in pro-
viding a backbone of support to the debilitated patient. In
relation to HIV scourge, United Nations study [13] re-
vealed that women are significantly affected as care re-
sponsibilities fall to older and married women since a
substantial proportion of PLWHA move back to their
communities of origin at some stage of the illness to be
cared for by family members.
Also significant to the study were the age groups 41 to
50 years that form the majority that participated in care-
giving. It would imply that majority of caregivers are
wives, mothers, grand-mothers. Previous report [26] in-
dicated that the average caregiver is 46 years old female,
married and working outside the home. Majority of care-
givers lived in large households with minimal household
income, coupled with high financial costs of caregiving.
These households face the possibility of moving further
into indigence [53].
This study revealed that most caregivers received lim-
ited or no support from family members, community or
government and they expressed need for support. Care-
givers took up the caregiving role without educational
preparation. They were in most cases unfamiliar with the
type of care they must provide or the extent of care
needed. Knowledge on how to assess community re-
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342
sources was limited. This could be due to failure by the
health care workers to assess informal primary caregivers
skills before assumption of caregiving role or they were
just silent on the continuity of care at home which they
were afraid to initiate a follow-up. In most cases, the
caregivers are unprepared to provide care, due to inade-
quate knowledge of health care delivery since they re-
ceived limited guidance from the formal health care pro-
viders [54,55]. It has been suggested that caregivers re-
quire some form of training to effectively provide care
and that it is unfair to presume that carers have the nec-
essary knowledge and skills to care for an ill relative
without some form of support [56-58]. Therefore pro-
viding information and training prior to care recipient
discharge would ensure caregiver’s preparedness for
caring role.
During the study, the need for emotional support was
also identified which could be provided through health
care providers linking caregivers to existing support sys-
tem available in the community. Such an assistance could
minimize the pressure and burden on carers since reports
indicate that caregivers experienced mixture of conflict-
ing emotions such as commitment, frustration, anger,
loneliness, exhaustion and depression, guilt, anxiety, love
and warmth which could have negative consequences on
the care giver [39,57]. They further revealed that helping
the care giver to acknowledge and reconcile with these
emotions can enhanced coping with the challenges of
being a carer.
Financial assistance was also identified as area care-
givers needed support. The scourge of HIV is greater
among the low socioeconomic class and tends to sap the
meager family resources thereby producing a higher level
of burden. Caregiving is time consuming therefore care-
givers who provide substantial amounts of care divert
their time from other productive chores resulting in fi-
nancial hardship. This is a common feature in low and
middle income countries like Nigeria where many live
below one dollar per day. Attempt to balance caregiving
with other activities, such as work produced negative
consequences and more stress on carer. Report indicated
that homes engulfed in poverty and are burdened with
financial costs of caregiving may move further into indi-
gence [13]. Such households with a sick family members
face the opposing pressures to work fewer hours and
spend more time caring.
Assistance with physical care such as in activities of
daily living is identified as area of need in this study. It is
apparent that most caregivers reach a point when they
realized that housekeeping routines and regular errands
were accomplished with great difficulty or left undone. It
has been suggested that assistance in activities of daily
living is also needed to alleviate the burden of care [13]
and such help should come from other members of the
family, individuals with the sameculturally background
(community support) or those with similar experience
such as HIV support [31].
8. Conclusions and Recommendation
In Nigeria, with 2.98 million people infected with HIV,
many people will be needed to function as caregivers
even though caregiving is not without consequences.
This study revealed that caregivers experienced high
level of burden (physical, emotional, social and financial)
as a result of the care they rendered to PLWHA. There-
fore there is a need to relieve this burden by providing
necessary support in order to enhance the quality of care
of the patients as well as maintain the optimum well-being
of the caregiver. There should be training and re-training
of caregivers on coping and management strategies be-
fore they assume the caregiving role for PLWHA.
The development of policies that can systematically
assess the caregivers’ need should be promulgated. Coun-
seling sessions should be organized by government and
voluntary organizations regularly to present a forum
where caregivers could air their problems and challenges
encountered during caregiving services. Government
should encourage the formation of HIV community sup-
port groups to provide support to caregivers.
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