**9. Demographics**

*Suggestions for Addressing Clinical and Non-Clinical Issues in Palliative Care*

(10.4%) at the study site inform the choice of study setting [10, 60].

**7. Study design and participants**

Teaching Hospital (UCTH) is a tertiary institution and a referral center to other health care facilities. The facility offers both inpatient and outpatient services and collaborates with nongovernmental organizations (NGOs) in the treatment of PLWHA from rural/urban areas and neighboring country, Cameroun. The state is one the 12 + 1 states which contribute about 70% of HIV burden in Nigeria. UCTH is one of the centers for the management of PLWHA. The high HIV prevalence

The study utilized a cross-sectional descriptive research design with a convenient sampling technique. Two hundred and ninety nine (299) participants were selected for the study; however 260 completely filled their questionnaires and were aware of care recipient HIV status. Family caregivers were recruited through HIV clinic of the UCTH and Positive Development Foundation (NGO) visitation list of voluntary caregiver of PLWHA. Information letter and invitation were posted at UCTH HIV clinic and the Positive Development Foundation office where interested and willing participants were contacted by the researcher. This study is part of the research project previously published [10]. Therefore participants who met the inclusion criteria were individuals: who have been a primary caregiver for more than 1 month, have awareness of the care recipient status or have provided care for PLWHA patient with some functional abilities as a family member. Family caregivers age cuts across all age brackets, and often include children under the age of 16 [61]. The role of primary caregiver as associated with this study involved participants who provided unpaid physical support such as helping in activities of daily living, food preparation, shopping, managing scheduled medication, managing finances, overseeing medical appointment and emotional support to PLWHA. Questionnaires were coded and contact information was not included to ensure confidentiality. Ethical consent for the study was obtained from Health Research Ethics Committee of UCTH Calabar. Consent was also obtained from the Managing Director of Positive Development Foundation who helped to identify PLWHA caregivers. Informed consent was also obtained from study participants after full explanation of the aims and objectives of study. Participants were appreciated for

Structured questionnaires were the instrument for data collection, two versions of the questionnaire was developed: the English version and the Efik version (local dialect). The Efik version was translated from English into Efik and back-translated into English by experts to prevent loss of meaning. The researcher and trained field assistants helped with data collection through face to face contact, however some questionnaires were deposited with the caregivers who filled and returned within 1 week. The structured questionnaires consisted of 41 items, 7 demographic variables, 22 from Zarit Burden Interview (ZBI) scale and 12 measuring social support. Reliability of the instruments was attained through test–retest method. The questionnaires were administered to 10 caregivers of PLWHA in Calabar South. After 2 weeks the same questionnaire was administered again to the same subjects. Their responses during the two occasions were correlated using Pearson product-moment

correlation to obtain a reliability coefficient ranging from 0.85 to 0.96.

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their time.

**8. Instrument and measures**

Seven items make-up the demographic variables which included: participant's age, marital status, their current occupation, highest educational qualification, household income level, number of people in the household and duration of care. Duration of care was categorized into two namely: hours spent per day and years spent as a caregiver of PLWHA. Duration of care was predefined for the caregivers.

## **9.1 Caregivers burden**

The Zarit Burden Interview (ZBI) scale is a caregiver self-report questionnaire consisting of 22 items. Each item reflected the impact that patient disabilities have in the caregiver's life. The caregiver endorsed the degree of physical, emotional and social discomfort experienced on a 5-point Likert scale ranging from never, rarely, sometimes, quite frequently, or nearly always. The 22 items validated ZBI scale had reliability coefficient ranging from 0.88 to 0.92. Scores ranged from 0 to 88 and a high score is associated with higher level of burden.

#### **9.2 Support**

The support questionnaire contained 12 items which assessed the extent of support received in the form of information, financial help, emotional support as well as physical help with caregiving activities. The instrument was pilot tested with a reliability coefficient of 0.85 to 0.96. Caregivers indicated the extent of support received on a 4-point Likert-type scale, ranging from lots of support, some support, very little support and no support.

#### **9.3 Data analysis**

Descriptive and inferential data were obtained using Statistical Package for the Social Sciences (SPSS 16.0 software) which generated the frequency and percentages of the values. Chi-square test and T-test was used for inferential statistics. The level of significance was also determined at the *p* value of 0.05. The ZBI scale scores ranged from 0 to 88. The scores were categorized into four namely: 0 to 20 represented little or no burden; 21 to 40, mild to moderate burden; 41 to 60, moderate to severe burden; and 61 to 88, severe burden [62]. The support instrument was grouped into two namely: availability of support for "lot of support and some support," and lack of support for "very little support and no support."

### **10. Results**

#### **10.1 Socio-demographic characteristics**

**Table 1** describes the socio-demographic variables of 260 caregivers of PLWHA who participated in the study. The majority of caregivers were females 199 (76.5%). Age ranged from 10 to 80 years, with majority between 31 and 40 years, however the females formed the majority in all age ranges. Marital status revealed majority (93/35.8%) were single females. The majority (77/29.6%) had tertiary education as the highest educational qualification and (89/34.2%) caregivers were employed, while 60 caregivers left school to care for their loved ones with majority 49 (18.8%) among the female caregivers of PLWHA (**Table 1**).


**Table 1.**

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**Table 3.**

**Table 2.**

**Gender**

*The Exceptional Role of Women as Primary Caregivers for People Living with HIV/AIDS…*

Gender difference existed in the duration of care provided for PLWHA. The least duration 3–8 hours was spent by 36 (13.8) male caregivers while only 16 (6.2) female caregivers spent the same. 9–12 hours majority were spent by 145 (55.8) female caregivers. 13–24 hours of care was provided mostly by 38 (14.6) female caregivers. With reference to the years spent in caregiving, the majority 90 (34.6) female caregivers spent between 1 and 2 years, while the least 10 (3.8) female and 2 (0.8) male caregivers provided care to PLWHA for more than three years (**Table 1**). **Table 2** describes the household income as well the number of people in the household. The majority 130 (50%) family caregivers of PLWHA lived below a household income of US\$6.00/day while only 15 (5.8%) family caregivers spent US\$14.00 and above. The majority 153 (58.9%) lived in a household with about three to six members and only about 19 (7.3%) lived in small households with one to three persons (**Table 2**). **Table 3** describes gender difference in the level of burden among family caregivers of PLWHA ranging between 14 and 71 on ZBI Scale (**Table 3**); among the 49 (18.8%) caregivers that experienced no burden, the majority were females 39 (15.0) while 10 (3.9%) males. The 46 (17.7) female caregivers experienced mild to moderate while providing care. Ninety-three (35.8) caregivers experienced moderate to severe burden and the majority 69 (26.6) were females. Fifty-one (19.6%) family caregivers experienced severe level of burden in providing care to PLWHA and

**Variables Frequency Percentage (%)** Less than US\$6.00 130 50.0 US\$7.00-US\$8.00 59 22.7 US\$9.00-US\$10.00 25 9.6 US\$11.00-US\$12.00 18 6.9 US\$13.00-US\$14.00 13 5.0 US\$14.00 and above 15 5.8

1–3 19 7.3 4–6 153 58.9 7 and above 88 33.8

**Level of burden Female (%) Male (%) N = 260 (%) Range** No burden 39 (15.0) 10 (3.9) 49 (18.9) 0–20 Mild to moderate 46 (17.7) 21 (8.1) 67 (25.8) 21–40 Moderate to severe 69 (26.6) 24 (9.2) 93 (35.8) 41–60 Severe burden 45 (17.3) 6 (2.3) 51 (19.6) 61–88 **Total 199 (76.5) 61 (23.5) 260 (100.0) 0–88**

*DOI: http://dx.doi.org/10.5772/intechopen.93670*

**10.2 Gender difference in duration of care**

majority 45 (17.3) caregivers were females.

**Household income level US\$/Day**

**Number of people in the household**

*Household income and the number of people in the household.*

*The distribution of burden on Zarit burden interview (ZBI) scale.*

*The socio-demographic characteristics of caregiver respondents.*

#### *Suggestions for Addressing Clinical and Non-Clinical Issues in Palliative Care*

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*The Exceptional Role of Women as Primary Caregivers for People Living with HIV/AIDS… DOI: http://dx.doi.org/10.5772/intechopen.93670*
