East African Journal of Public Health East African Public Health Association ISSN: 0856-8960 Vol. 5, Num. 2, 2008, pp. 55-61

East African Journal of Public Heath, Vol. 5, No. 2, August, 2008, pp. 55-61

Disabled persons and HIV/ AIDS prevention: A case study of deaf and leprosy persons in Nigeria  

Ezinna E. Enwereji¹& Kelechi O. Enwereji²

College of Medicine¹, Abia State University, Uturu, Abia State, Nigeria Telephone 2348036045884, College of Medicine², Nnamdi Azikiwe University Awka, Anambra State, Nigeria
Correspondence to: Ezinna Ezinne Enwereji, College of Medicine: E-mail: hersng@yahoo.com

Received 10 October 2007, Revised 20 March 2008, Accepted 20 March 2008

Code Number: lp08012

Abstract  

Objective (s): (i) To investigate factors and conditions that influence HIV/AIDS prevention among leprosy and deaf persons in leprosy settlements in Nigerian; (ii) to examine the extent to which the Government includes leprosy and deaf persons in HIV prevention programmes; (iii) To identify immediate needs of leprosy and deaf patients in settlements (iv) to determine possible areas for improving services so as to explore potential solutions
Methods: Total sample of 227 inmates and 34 Health Care Workers were studied in three purposively selected settlements.  Two intervention concepts, participatory reservation approach (PRA) and planned action (PLA) were utilized in the study. The concepts enabled researchers to examine factors that influenced provision of HIV/AIDS prevention programmes to inmates in settlements. Data collection instruments were questionnaire and focus group discussions for inmates and interview guides for Health Workers. Data were analysed qualitatively and quantitatively with the help of Stat Pac Gold package.
Results: Findings showed that there were no reproductive health and and HIV prevention programmes in the settlements. There was lack of Governments’ commitment to fund health programmes and to train Health Workers, as well as rejection, isolation, discrimination and discouragement of HIV/AIDS prevention programmes in settlements.  There was poor knowledge of mode of transmission of HIV/AIDS among inmates. About 59 (53.6%) of inmates in Abia, and 60 (51.3%) in Oyo were not interested in voluntary counselling and sex education.  Findings showed that inmates in the leprosy settlements were at risk of unprotected sex. About 99 (43.6%) in Oyo and 88 (38.8%) in Abia State, especially those who were single cohabited with opposite sexes to have babies in settlements (p = 003).
Conclusion: Number of inmates that had babies in settlements justifies providing sex education, reproductive health and HIV/AIDS prevention programmes. This will assist in reducing HIV/AIDS prevalence among disabled persons in Nigeria.  

Key words: Leprosy, deafness, HIV/AIDS, family planning, Nigeria

Introduction 

Periodic assessments of health services especially HIV/AIDS prevention programmes available to disabled persons particularly those with leprosy and/or deafness are crucial to their rehabilitation process. In developing countries including Nigeria, individuals with disability are confined in settlements (1,2,3).  Whilst HIV prevention should include disabled persons so as to achieve the much needed reduction in prevalence, the focus of Government on able-bodied can suggest that reduction of HIV prevalence among the disabled persons is not effectively addressed (4,5,6).  In resource poor countries, policy makers and programme operators fail to carry out periodic assessment of the services available to disabled persons especially those confined in settlements (7,8,9). There is need to note extent to which HIV prevention programmes are provided to disabled women especially those with leprosy and/or deafness in settlements.

Health Workers have been termed as the worst stigmatizers of disabled persons (10,11). They exclude disabled persons from most health programmes   including HIV prevention (12,13) for reasons of ignorance and prejudice (14,15).  Studies have documented that mere mention of the name ‘leprosy’ made some Health Workers to exclude leprosy patients from health education programmes (16). The problem is that disability is seen from different perspectives.  Some individuals see disability as an incurable disease, strongly influenced by religion, socio- economic status (17) and educational background (18).

Others view it as social exclusion (19) or poverty imposed on people as a result of functional limitations (20).  These views on disability are what is disabling and not the impairments (21) because they translate to unfair and unjust treatment of the disabled (22). The question is: what factors and conditions influence HIV/AIDS prevention programmes to disabled persons in settlements in Nigerian? Answers to this question will reveal efforts made to reduce HIV prevalence among the disabled persons in Nigeria.

Studies have documented two concepts, participatory reservation approach (PRA) and planned action (PLA) as useful in examining factors and conditions that influence health care services including HIV prevention programmes to disabled persons.  PRA and PLA are important tools for planning and evaluating health programmes as well as for gaining useful information from both service providers and beneficiaries (23). Specifically, PLA shows how policies made could be improved to benefit target groups (24).  PLA is not only a methodology that generates information to policy makers but also a facilitating tool that enables Health Care Workers to assess their effectiveness in providing services (25).  The objectives of the present study were: (i) To note  factors and conditions that influence HIV/AIDS prevention to leprosy and deaf patients in leprosy settlements, (ii) To identify immediate needs of leprosy and deaf patients in settlements and (iii)To note possible areas for improving services so as to explore potential solutions

Methods

This descriptive study examined factors and/or conditions that influenced health care including HIV prevention services to leprosy and deaf inmates in settlements in Nigeria. Three settlements out of eight [8] settlements in Nigeria were purposively selected for study.  These  were Uzuakoli in Abia State, Ohaozara in Ebonyi State and Ogbomoso in Oyo State.  These Settlements were the only functional ones with organized inmates accessible to researchers at the time of study. Inmates in other leprosy settlements had deserted the settlements for street begging.

A total population of 227 inmates available during the study were included. This comprised 97 inmates in Uzuakoli, 13 in Ohaozara, and 117 in Ogbomoso.  To authenticate the responses of inmates, a total convenient sample of 34 health workers in the settlements were interviewed.

Data collectioninstruments were questionnaire, focus group discussion, and interview guides. The questionnaire was written in English but translated to the two local languages of the study population (Igbo and Yoruba). The greater number of the inmates could not read and write. A total of 32 focus group discussions (FGD), consisting of 6-9 leprosy and deaf inmates were conducted with the help of 3 research assistants, one recorder, one facilitator, and 2 observers who are conversant with the use of sign language, as well as Igbo and Yoruba languages. The research assistants who could use sign languages were used to interview those who were deaf.  All the discussions which were later translated and transcribed were both documented in writing and recorded on audio cassette. Because a good number of the inmates were illiterates, the questionnaire was administered by researchers and three trained research assistants. The two concepts, PRA and PLA were used for data collection. PLA assisted researchers in planning and noting the policies on health care services for inmates in settlements. PRA was used as a methodology and a systemic process which enabled researchers to collect information from inmates in a group.  PRA, through group inquiry and interaction, helped to reveal inmates’ problems and needs.

Data from Ohaozara were analysed together with that in Uzuakoli because of the small population of inmates. This was done because Ohaozara and Uzuakoli have similar cultural backgrounds.  Ohaozara still benefit from certain services from Uzuakoli. Moreover, Ohaozara was part of Uzuakoli before the creation of Ebonyi State in 1992.

Data Analysis 

Data were entered and analysed using a computer.  Stat Pac Gold package was used in the analysis. Percentages, chi squared tests and p-values less or equal .05 were used during data analysis. Also responses from focus group discussions were translated and transcribed. 

Data validity and reliability: 

The questionnaire was translated into the local languages and later retranslated to English language. The instruments for study were pre-tested using similar institution not included in the study. The responses were later analyzed and ambiguous statements were replaced 

Ethical consideration:

Ethical Board of the University approved the underlying ethics of this research. Consequently, written approvals of the Directors of the three settlements, the three leprologists in Ministries of Health in charge of the settlements were obtained.  Oral and written consents of Health Workers and inmates in the three settlements were sought and obtained.  Their respective approvals enabled the researchers to collect information from them uninhibited. The instruments used for study were constructed in a way that did not request the participants to write their names or to give any thing to identify them.  The researchers gave statements of confidentiality as well as briefs on objectives of the study.  Also an oral request for permission to tape-record the session was made to leprosy patients and this was guaranteed.

Results

In this analysis, settlements would be represented by the States they are situated. In effect, Abia State would be used instead of Uzuakoli and Ohaozara, while Oyo State would be used instead of Ogbomoso. Further, results from leprosy and deaf patients would be presented according to States.  This is to enable researchers note areas of gap in provision of health care services including HIV/AIDS prevention for appropriate recommendation.

Results of Focus Group Discussion (FGD) in Abia State: 

Immediate needs of the inmates: 

The results of focus group discussion in Abia State showed immediate needs of inmates as the following: (i) drugs for general ailments (ii) electricity, (iii) regular means of transportation to and from the settlement, (iv) schools for children, (v) follow up visits, (vi) trained health workers for case management, and (vii) employment opportunities, (viii) it was noted that inmates did not include HIV prevention and sex education as part of their immediate needs showing that these services were not regarded as priority.

Availability and affordability of health care services to inmates: 

The result showed that two health clinics were located in each of the two settlements in Abia State. One clinic was for treating leprosy disease, and the other for minor ailments. Despite the fact that a clinic existed for treating minor ailments in the settlements, inmates’ reports showed that treatments for minor ailments were not always regular and moreover, that such treatments were paid for.  Further finding showed that some inmates who were unable to pay for their treatments depended on herbs as alternative and cheaper means of treatment.  

Inmates’ knowledge of HIV/AIDS: 

Findings showed that inmates had poor knowledge of modes of HIV transmission.  A good number of inmates perceived HIV infection as witchcraft from the enemy.  Moreover, some inmates believed that anybody with leprosy infection would be protected from HIV infection.  When the issues of HIV counselling and testing were raised, a good number of the inmates saw these services as unnecessary in settlements. Some inmates were of the opinion that testing them for HIV would mean wishing them the infection. They preferred religious programmes more than that of HIV and sex education, stressing that religion would help to shape their moral values.  However, a few others were of the opinion that government should provide them with health programmes like their able-bodied counterparts.

Follow up visits: 

When asked of follow-up visits, inmates’ report showed that except for few visits from Social Workers, no other individual including relations and health workers visit them even when critically sick.  This lack of visit suggests the extent to which these inmates were lonely and isolated

Results of FGD in Oyo State: 

Immediate needs of inmates

Focus group discussion in Oyo State, identified immediate needs of inmates as:  (i) trained health workers to manage ulcers, (ii) drugs for treating general ailments, (iii) electricity, (iv) easier means of transportation to and from settlement, (v) potable water, (vi) repair of cassava grinding machine, (vii) shoes to protect against wounds, (vii) regular visits from relatives, (viii) training and recreation facilities, (ix) schools for children’s education,  and (x) toilet facilities.

Drinking and domestic water source in this settlement was well. Also majority of inmates said they toilet in bushes while “Ayo”, (local ludo) was the only recreation facility available.  Further, none of the inmates in Oyo State, like in Abia State, mentioned HIV prevention programme as of immediate need.  

Availability and affordability of health care services to inmates: 

 Finding revealed that only a health clinic for treating leprosy was available in this settlement. The clinic for treating minor ailments, Methodist Hospital, was located about 9 kilometres away from the settlement.  A good number of inmates confirmed that they scarcely visit this hospital because of lack of money for treatment and transportation.  Further reports from inmates revealed that apart from treatment for leprosy that was free, that other treatments were paid for. As an alternative, most inmates said they depended on ‘agbo’ (herbs) for treating minor ailments.

Inmates’ knowledge of HIV/AIDS: 

As in Abia State, majority of the inmates had poor knowledge of modes of HIV transmission. A good number of them termed HIV infection, as poison from enemies, which could be cured with herbs. Further report revealed that some children of inmates cohabit with inmates of opposite sexes to raise children.  When the issues of HIV testing and counselling were raised, majority of the inmates showed no interest. Rather they preferred religious programmes arguing that religion would minimize sexual immorality.

Inmates’ reasons for lack of HIV/AIDS prevention in settlements: 

Inmates gave several reasons for lack of HIV/AIDS prevention in settlements.  Summary of reasons given by inmates in Abia and Oyo States are in Table 1. 

Background information of inmates: 

The respondents were made up of individuals with disabilities.  They comprised of 13 (5.7%) with leprosy and deafness, 5 (2.2%) with leprosy and blindness and 3 (1.3%) had speech difficulty while the rest 206 (90.7%) had only leprosy.  Ages of inmates studied ranged from 15 years to 70 years and above. However, ages of 122 (53.7%) of the study population were determined using historical events because they had no formal education. Inmates in Oyo State, mean age 58.4 years + 15.5 were older than those in Abia State mean age 46.3years + 18.0.

The respondents in Oyo State were made up of 69 (59%) males and 48 (41%) females, while in Abia State they consisted of 67 (60.9%) males and 43 (39.1%) females.  All the inmates were Christians except 4 (1.8%) in Oyo State that belonged to moslem and traditional religion. 

Table 1: Inmates reasons for lack of HIV prevention 

 Sex and marital status of inmates 

A good proportion of the inmates 126 (55.5%), especially males, were married.  In this study, more of the inmates in Abia State 72 (65.5%), than in Oyo State 54 (46.2%) remained married (p = .03).  Table 2 contains details of findings.

Occupation of the inmates:

Findings showed that all the inmates excluding the aged and incapacitated, had meaningful occupation.  In Oyo State, 91 (77.8%) of inmates and in Abia State, 69 (62.7%) of the inmates were farming while 10 (8.5%) in Oyo and 17 (15.5%) in Abia State were trading. Also 7 (6%) in Oyo and 9 (8.2%) in Abia were employed to work in the settlements as leprosy attendants. The rest were shoemaking, weaving, apprentice student, sewing/tailoring or traditional birth attendant.

Level of education of inmates:

A high proportion of inmates had no formal education.  More of the inmates in Oyo State 83 (70.9%), than in Abia State 39(35.5%), had no formal education (p=0.007). In all, only few inmates in the study were educated above secondary level (Table 3).Inmates’ marital statuses and number that had children in settlements:

Finding showed that inmates, irrespective of their marital statuses, had babies while in settlements. A total of 187 (82.4%) inmates made up of 99 (43.6%) in Oyo State and 88 (38.8%) in Abia State made babies in settlements.  Mean number of children inmates had in Oyo State was 3.1± 1.9 and in Abia State was 3.2 ± 1.8.  Table 4 contains details of those who had babies in settlements.

Medical Coverage:

The number of inmates currently on leprosy drugs was noted. Finding showed that about half of inmates in Oyo State 64 (54.7%), and in Abia State 57 (51.8%), were on drugs. The rest were not on drugs because they had completed their leprosy treatment though majority of them had leaking ulcers. 

Availability of health care facilities to inmates:

As confirmed during focus group discussion, inmates both in Abia and Oyo States had limited health care facilities available to them.  To augment this, inmates used several alternative methods when sick.  Table 5 contains details of what inmates used.

Table 2: Marital Status by sex 

Table 3: Level of Education of the Inmates:

Table 4: Marital status of inmates who had children in settlements 

Table 5: Alternative health care methods used by inmate

Affordability of health care services:

Finding showed that only a few inmates 29 (24.8%) in Oyo State, and 9 (8.2%) in Abia State were treated free for minor ailments. The rest paid for their treatments.  In effect, a total of 88 (75.2%) inmates in Oyo State and 101 (91.8%) in Abia State paid for their treatment. 

Inmates responses on support for HIV counselling and testing: 

Finding showed that inmates lacked adequate knowledge of modes of HIV transmission. This lack of knowledge which was also confirmed during focus group discussion resulted to their lack of support for HIV counselling and testing.  About 60 (51.3%) inmates in Oyo State and 59(53.6%) in Abia State were not in support of HIV/AIDS counselling and testing as well as sex education in settlements.  The main reasons for their disinterest were that such services would increase their financial burden and also their sexual immorality.  Majority of inmates preferred religious programmes to others. Religion was seen as a veritable tool for checking sexual immorality.  Table 6 contains inmates’ responses.

Table 6:  Inmates responses on HIV counselling and testing 

Follow-up visits: 

 Follow-up visits to inmates were poor.  Inmates report showed that neither health workers nor relations visit them even when sick.  Apart from leprosy attendants who were said to visit for purposes of managing those with leaking ulcers, other health care workers scarcely visited them. In all, only 26 (22.2%) inmates in Oyo State and 17 (15.5%) in Abia State said they were visited.

Findings from Health Workers:

Background information: 

A total convenient sample of 34 health workers, 24 in Abia and 10 in Oyo States were interviewed. These comprised 9 (26.5%%) males and 15 (44.1%) females in Abia State and 6 (17.6%) males and 4 (11. 8.%) females in Oyo State.

Out of those studied, 12 (35.3%) of them in Abia and 4 (11.7%) in Oyo State were married. The rest were single, widowed, and divorced/separated. Also except for 2(5.9%) of health workers in Oyo State that were moslems, others were christians.

Staff strength: 

Staff strength was poor. The settlements lacked enough clinically trained health care workers in their employment.  Out of 10 health workers in Oyo State, only a Doctor, and 2 Nurses were clinically trained to manage some of the inmates’ health problems while out of 24 health workers in Abia State, only a Doctor and 7 Nurses were employed. The rest were working as Orderlies, leprosy attendants, and social workers. 

Health care services in settlements: 

Health workers’ report showed no HIV/AIDS prevention programmes in settlements.  This report confirmed that of inmates during the focus group discussion.  The reason for not providing HIV prevention was sought from the health workers.

Health Workers’ Reasons for not providing HIV/AIDS prevention in Settlements:

Health Workers gave several reasons why HIV/AIDS prevention was not provided in settlements.  Table 7 contains some of these reasons.

Table 7: Health workers’ reasons for lack of HIV/AIDS prevention in Settlements

*** multiple choice

From this Table, the two main reasons given by health workers were: inability of governments to fund health care programmes in settlements and also inadequate training of health workers on HIV/AIDS prevention.  Study found that only the two doctors out of 34 health workers had attended workshops and seminars on HIV/AIDS.

Follow-up visits:

Health Workers’ responses showed that they rarely visited the inmates except the aged and the incapacitated inmates. This confirmed reports of inmates that Health Workers scarcely visited them even when sick.

Health Workers’ job satisfaction: 

Health workers’ job satisfaction was also assessed. This was done using 9 items in Nottingham’s life satisfaction index to ascertain the extent to which they were committed to their duties in settlements.  Scores of “1” and “0” were allotted to positive and negative responses respectively. A total of 9 scores were obtainable.   Range of scores obtained for this study was 4 to 9.  Higher scores indicated better job satisfaction.  Cut off score was 6. About 16 (66.7%) of all the health workers scored above the cut off score.  Specifically, in Abia State, mean score was 5.5 ± 0.17 while in Oyo State; mean score was 6.1 ± 0.57, showing that health workers in Oyo State had better job satisfaction than their colleagues in Abia State.  This was statistically significant (p= 0.000000).

Discussion.

A unique finding of strength is that the vast majority of inmates in both States had means of livelihood. They were essentially farmers and they expressed high self-confidence with regard to their ability to produce food despite their impoverished setting and poor health conditions. As a result, none was found begging during the survey.

The study noted that inmates in both States had common needs except for few disparities. For instance, while immediate needs of inmates in Abia State were, repair of palm oil processing machine and employment opportunities, that of inmates in Oyo State were repair of cassava grinding machine, provision of toilet facilities, shoes to protect wounds, training and recreation facilities. These needs reflect gaps in effective coordination of services to leprosy patients in settlements.  Negative attitude among inmates to reproductive health services, low priority to HIV prevention and lack of time, funds and support from governments and health workers, limited access to and use of health care services by inmates.  As a result of the non-use of reproductive health care services, a good number of inmates especially those single, had babies while in settlements. This finding on risky sexual behaviour agrees with that of Akimpelu FO and Akesole FA (2, 8) and indicates the extent to which inmates were at risk of multiple sex partners, unprotected sex as well as HIV infection.  Finding on inmates’ risky sexual behaviour calls for family planning services to prevent unwanted pregnancy and sexually transmitted infections including HIV/AIDS. This is in agreement with the recommendations of (13,21) that disabled persons in institutions need family planning services to reduce high risk of unwanted pregnancies.

The fact that inmates were neither visited by Health Workers nor by relations shows that they were isolated, discriminated and stigmatized. The view that inmates were stigmatized agrees with that of (19). The derogatory and demeaning language used in labelling disabled persons stigmatize them and result in their being denied most social services.  In this study, governments’ lack of commitment to fund health programmes, as well as train health workers on HIV/AIDS prevention, helped to stifle HIV prevention in settlements, and indicates discrimination against disabled.  This lack of commitment could affect reduction of HIV and AIDS prevalence among the disabled.

Study showed a clear link between Health Workers access to good quality education and training and job satisfaction.  Other authors have also documented a link between quality education and/or training and ability to provide effective health care services (11, 12).  Accessible relevant training and/or continuing professional development is vital in providing effective HIV/AIDS prevention to inmates in settlements. In this study, majority of Health Workers had no formal training in HIV and AIDS prevention.  Lack of opportunity for Health Workers training on HIV programmes is not only harmful for HIV prevention but also has far reaching repercussions for increased HIV/AIDS prevalence among inmates in settlements. In this study, inmates as well as health workers disapproved informing unmarried boys and girls in settlements about STDs and HIV transmission for fear of increased sexual immorality. This fear has profound impact on the effectiveness of HIV/AIDS prevention, treatment, and care programme since inmates might be discouraged to use prevention services. This finding supports that (13) individuals refuse HIV testing because of the  fear of positive result which in their mind is linked to stigma, as well as social repercussions they might experience if they test HIV positive.

Conclusion

From the findings, disabled persons in Settlements face a lot of challenges stemming from interrelated sources. These challenges prevent them from benefiting from reproductive health services including HIV prevention.  However, the use of PLA and PRA concepts in the study evoked dialogue between researchers and sample and assisted researchers to collect first hand information from inmates. These concepts enabled researchers to identify areas for improvement in services provided to inmates.

In this study, religion acted as a powerful panacea.  Most inmates viewed religion as a source of moral stability for restraining sexual life in settlements.  Given the current interpersonal relationship between inmates and health workers which translated to discrimination, rejection and isolation, as highlighted in this study calls for a need to strengthen intervention strategies to address limitations to effective health care delivery including HIV prevention in settlements.

Therefore there is need for policy and programme officers in Governments to fund and strengthen HIV interventional strategies by training health workers in settlements to encourage multi-sectoral approach to HIV prevention. The option of family planning through health education to reduce unplanned pregnancies and prevent HIV/STIs should also be considered. These should go simultaneously with other health programmes to improve the socio-economic and health conditions of this population.

Time and scope limited this study. More research needs to be done to evaluate the conditions under which policy and programme officers exclude disabled persons from HIV/AIDS prevention programmes.

Acknowledgement :

I wish to appreciate the cooperation of inmate and the Health Workers leprosy settlements and Health Workers in the three Settlements studied for their disposition and willingness in providing needed information.  My special gratitude goes to Professors Adeniji, and Oladepo for the pains they took to critique the work. Also to Professor Gbamboye and Mr. Joseph for analyzing the data.  I am thankful to the Ethical Board of Abia State University for the approval of the study.

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