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Disability, locus of control and HIV and AIDS prevention and control
Calvin Gwandure
Abstract
The study explored the locus of control orientation of students with disabilities in relation to HIV and AIDS prevention and control. The student sample consisted of 100 students who voluntarily participated in the study. There were 50 students with disabilities in the experimental group and 50 students without disabilities in the comparison group. The study assessed the students` locus of control orientation and their perceptions of sexuality in relation to HIV and AIDS prevention and control. The KABP methodology was used to assess students' knowledge, attitude, beliefs and practices. The findings of this study were that disability is a risk factor in perceptions of personal control and in HIV and AIDS prevention and control among students with disabilities.
Introduction
The issue of disability and equal access to health and education facilities has been a topical issue locally, regionally and globally. Some researchers tend to argue that people with disabilities are likely to experience social isolation or discrimination in one form or the other. Such discrimination could be observable or subtle. As well, paternalistic attitudes towards people with disabilities can lead to a sense of lack of control over decisions affecting them (Kabzems & Chimedza, 2002; United Nations Development Programme, 2003), and, thereby reduce the likelihood that they will challenge government and civil society to incorporate disability programs in HIV and AIDS programmes.
This study looked at the relationship between disability, locus of control, and HIV and AIDS risk. The study was prompted by the rising cases of HIV and AIDS, and sexually transmitted diseases among university students in Southern Africa. The study sought to investigate why HIV and AIDS cases were on the increase despite the education campaigns and the provision of free protective healthcare products on campus. The study was particularly interested in finding the reason why students with disabilities seemed to be indifferent to the awareness and education programmes offered by the university. The study targeted the locus of control orientation of the students as the starting point in understanding behaviour change among the students.
Locus of control refers to an individual `s beliefs about whether the outcomes of their actions depend on what they do or on events outside of their personal control (Esterhuysen & Stanz, 2004; Rotter, 1990). Individuals with an internal locus of control are likely to believe that outcomes are a consequence of an individual` s own striving, ability, and initiative, whereas those with an external locus of control tend to believe that outcomes are independent of their own behaviour and attribute outcomes to chance, social structures, fate, or powerful others (Rotter, 1990). Individuals with an internal locus of control could be expected to engage in HIV and AIDS preventive behaviours.
Disability is associated with the development of external locus of control in affected individuals (Caplan & Schooler, 2003). People with disabilities are likelier than people without disabilities to believe that they are not in control of most of the events that happen around them (Mackenbach, Borsboom, Nusselder, Looman, & Schrijvers, 2001). It is also argued that the nature of the impairment could contribute to the development of external locus of control. If the disability is affecting the individual` s ability to cope with daily living activities, the individual is more likely to be external in locus of control (Mackenbach, Borsboom, Nusselder, Looman, & Schrijvers, 2000). This observation could imply that there could be individuals with disabilities who have an internal locus of control due to their ability to manage the disability and their daily living skills. It is also argued that disability could be a risk factor in HIV and AIDS prevention and control (Groce, 2003; Kalichman, 2000; Natterlund, Gunnarsson, Ahlstrom, 2000). For example, people with hearing or visual impairment were found to be more vulnerable to HIV infection (United Nations Development Programme, 2003). This study was interested in the personality-related aspects of locus of control in self-regulation among people with disabilities.
A related factor in Africa is that some people with disabilities believe that disability is caused by supernatural forces beyond an individual` s control (Kabzems & Chimedza, 2002). Fatalism is the belief that an individual` s fate, health, or wellbeing could be controlled by powerful external forces such as evil spirits or witchcraft (Burker, Evon, Sedway, & Egan, 2004; Burker, Evon, Sedway, & Egan, 2005). In this sense, fatalism could be associated with the development of external locus of control orientation among people with disabilities (Phares, 1976). Individuals with a fatalistic attitude towards life may have low self-confidence or they may not use their intellectual skills adequately to deal with their immediate health problems (Caplan & Schooler, 2003). In this regard, fatalism could be a stumbling block in HIV and AIDS prevention as it tends to interfere with logical reasoning and information seeking behaviours (Nicholas & Durrheim, 1995; Shaw, McColl, & Bond, 2003).
When people get into relationships they are expected to choose partners who seek to promote safe HIV and AIDS behaviours. Some researchers argue that individuals with an external locus of control may choose partners recklessly or may not ``play safe bets`` most of the time (Kalichman, 2000; Melkote, Muppidi, & Goswami, 2000; Myers, Madathil, & Tingle, 2005; Phares, 1976).
Aim of the Study
The aim of the study was to investigate the role of locus of control in HIV and AIDS prevention and control among university students with disabilities. The study was interested in the students` locus of control orientation and their attitude, knowledge, beliefs and practices in relation to HIV and AIDS prevention and control. The study specifically sought to answer the following hypotheses:
1. Students with disabilities will differ from students without disabilities in terms of locus of control orientation.
2. Students with disabilities will differ from students without disabilities on measures of HIV and AIDS risk.
Method
Research design
This was a cross-sectional study that sought to assess the locus of control orientation of students and their sexuality in relation to HIV and AIDS prevention and control. The study sought to gather qualitative information on the students` views and experiences in terms of their ability to protect themselves from HIV and AIDS.
Sample
The sample was made up of 100 students drawn from an African university. There were 50 students with disabilities and 50 students without disabilities. The study recruited participants by putting up a large poster asking students with disabilities and students without disabilities to register and participate in the study. The Co-ordinator of students with disabilities also announced the same message to students in the Disability Resource Centre. Participation was voluntary and the purpose of the study was explained to the students. The study was conducted as part of a series of workshops to all students on behaviour change in the context of HIV and AIDS. The participants had the following types of disabilities: physical handicap, visual handicap, cerebral palsy, and hearing impairment. The study was conducted in the Disability Resource Centre where there were facilities for the various disabilities.
Ethical clearance
Ethical clearance was sought from the university ethics committee for human subjects. Permission to carry out the research in the university was granted by the Registrar of the university.
Measuring Instruments
Rotter's Locus of Control Scale
This self-report measure is widely used in Africa and internationally (Esterhuysen & Stanz, 2004). It was used to measure the locus of control orientation of the students. The instrument has 23 items and the reliability of the instrument for this sample was .80 (Cronbach alpha). Scores ranging from 12 to 23 points indicated external locus of control and scores below 12 points were indicative of internal locus of control. The instrument was transcribed into Braille in the Disability Resource Centre to make it accessible to students with visual impairment. The Co-ordinator of the Disability Resource Centre assisted participants who had difficulties in completing the test.
The WHO AIDS KABP Questionnaire
The WHO AIDS KABP Questionnaire was used to measure HIV and AIDS risk behaviours of the participants. The KABP methodology is widely used in Africa and elsewhere to measure risk HIV and AIDS behaviours (International Organisation for Migration, 2004; Peltzer, 2005; Peltzer, Nzewi, & Mohan, 2004; Pettifor, Rees, & Hlongwa, 2004; Simbayi, Chauveau, & Shisana, 2004; Shisana & Simbayi, 2002), though questions have been raised about its reliability and validity. For example, the questionnaire has been used in HIV and AIDS risk surveys (Shisana, Rehle, Simbayi, Parker, Zuma, Bhana, Connoly, Jooste, & Pillay, 2005) as well as to monitor the level of HIV and AIDS awareness among the target population before an intervention or behaviour change training programme is introduced.
The items of the questionnaire asked participants about HIV and AIDS knowledge, attitude, beliefs and risk practices. The responses were put on a 4-point Likert-type scale. Risk scores ranged from 14 to 28 points on the scale. Individual scores below 13 points indicated non-risk HIV and AIDS behaviours. The reliability of this instrument for this sample was .86 (Cronbach Alpha). The instrument was transcribed into Braille to enable students with visual handicap to read the self-report questionnaire.
The focus group qualitative data gathering technique
Focus group discussions were used to gather qualitative data on risk HIV and AIDS behaviours among students. The use of focus group methodology was found to be effective in capturing salient view points and personal feelings about reproductive health, sexual health, and HIV and AIDS (Webb & Kevern, 2001) thus augmenting the statistical data gathered from the two instruments described above. Focus groups availed students an open platform in which to express their opinion freely on the subject. Some of students with disabilities had complained previously that they could not get access to certain venues outside the university campus and that some venues on campus could not be accessed by people using a wheel chair.
Procedure
Rotter's Locus of Scale and the KABP measure were administered to a group of 50 students from the Disability Resource Centre and to 50 students from the comparison group. The two tests were transcribed into Braille to meet the requirements of students with visual handicap without changing the content, validity and reliability of the tests. The participants were asked to choose statements from the two questionnaires that best described their personality and sexuality. They were told that there were no right or wrong answers. All the participants who needed help were assisted to complete the measures. The sign language expert from the Disability Resource Centre assisted students with hearing impairment to complete the two self-report questionnaires.
After completing the self-report measures, the participants were asked to discuss whether or not they were able to protect themselves from HIV and AIDS. Students with disabilities were grouped according to their learning groups, that is, the students grouped themselves according to their disabilities.
Data Analysis
The quantitative data were analysed using SAS software. T-tests for independent samples were run to determine the statistical significance of differences between students with disabilities and students without disabilities with respect to their locus of control orientation and risk HIV and AIDS behaviours. The views of participants in focus group discussions on HIV and AIDS were qualitatively recorded in point form by a panel of judges. A thematic content analysis was conducted to analyse the main issues raised by the participants in each category of disability (Brandt, Dawes, Africa, & Swartz, 2004).
Results
Characteristics of the study sample
Demographic and biographical information provided by students when they registered to participate in the study showed that most students with disabilities came from previously disadvantaged backgrounds. The participants were mainly sponsored by government and non-governmental organisations for their education in primary school, secondary school, and in university. Some participants with disabilities attended special schools for people with disabilities and some of these schools had residential facilities. Students with disabilities in this study were not guaranteed of residential accommodation. Their learning equipment was largely sponsored by donor agencies and the students largely depended on welfare organisations for their daily living requirements in college.
The characteristics of students with disabilities showed that they were a group that did not have more information on HIV and AIDS. They were not exposed to many training programmes on HIV and AIDS due to limited mobility and accessibility. The group had a haze idea of how HIV and AIDS differed from other deadly diseases.
Quantitative findings
The difference between mean test scores of students with disabilities and students without disabilities on locus of control was statistically significant; t (98) =2.67, p< .01. Their means were 13.1 (SD, 3.88) and 11.2 (SD, 3.61) respectively. The mean of students with disabilities fell in the external locus of control range while the mean of students without disabilities was in the internal locus of control category.
There was a statistically significant difference between the mean test scores of students with disabilities and students without disabilities on HIV and AIDS risk; t (98) =7.51, p< .01. Their means were 18.5 (SD, 4.96) and 12.3 (SD, 3.12) respectively. The mean score of students with disabilities was in the HIV and AIDS risk range while that of students without disabilities was in the safe range.
Focus group findings
Responses of students without disabilities that were compiled from focus group discussions reflected the general ideas about HIV and AIDS that the researchers dealt with in most of the workshops on HIV and AIDS prevention and control. The issues raised were that students could be vulnerable to HIV and AIDS in universities because of: poverty, overcrowding, rich men or women who abused and exploited young or poor students, unavailability of enough male and female condoms at the university clinic, poor quality condoms, and that they needed more peer education programmes to develop self-help skills. However, the present study found it worthwhile to dwell on the responses of students with disabilities as this was the group under investigation.
The thematic content analysis of the focus group discussion for students with disabilities is represented in Table 1 below.
Table 1:
Focus group discussion responses by disability group
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Group
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Responses
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Hearing Impairment
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o Information on HIV and AIDS education was hardly available in sign language.
o The information, education, and communication (IEC) materials were not written in sign language
o Mass media programmes did not seem to address the needs of people with hearing impairment or target them in HIV/AIDS programmes
o The media did not seem to highlight the plight of people with hearing impairment in HIV and AIDS prevention and control programmes
o Very few people were patient to talk about HIV and AIDS issues with people with hearing impairment
o They did not receive new information on prevention and control on a regular basis as compared to people without disabilities
o They relied on their partners and friends as the sources of information as some healthcare centres did not have personnel who could communicate in sign language
o The doctors, psychologists, nurses, and other healthcare providers at the clinic could not communicate in sign language
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Visual Impairment
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o They did not know how to use the condoms properly as they could not "see" the demonstrations that were provided by health educators.
o Their partners normally assist them to ensure that the condoms are not defective and that they have not expired.
o They sometimes used friends and relatives to find "healthy" partners for them but the relatives would not force the prospective partner to have a compulsory HIV test
o They sometimes challenged their new partners to go for an HIV test, if they refused they would suspect that the partner was HIV positive or had a sexually transmitted infection
o Sometimes people with visual handicap tended to marry amongst themselves and that made it difficult for them to know about HIV and AIDS precautions.
o They said they could not be suspicious that a partner was physically ill or had HIV and AIDS by ``looking `` at the physical appearance of the individual as sighted people sometimes do.
o They would suspect that a prospective partner was HIV positive by: detecting bad smells, feeling the skin for rashes, wounds, and feeling the prospective partner` s hair
o They would be suspicious of a bad cough
o They said they were afraid of being injected with the HIV and AIDS virus if they visited some of the primary healthcare centres as they heard of such stories in the media that HIV could have been created by people.
o They also were misinformed that the lubrication fluid in the condom could be infected with HIV.
o They showed a strong belief in witchcraft and they believed that their disability was largely caused by supernatural powers although they were aware of some of the natural causes of visual handicap
o They believed that traditional medicine could cure HIV and AIDS.
o They believed that some faith healers could treat people with HIV and AIDS
o They were misinformed that antiretroviral drugs were a cure for HIV and AIDS
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Motor Impairment (in wheel-chair)
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o They reported of unfaithful partners and abusive treatment in relationships.
o They complained that it appeared as if able-bodied people were feeling sorry for them and having sex with disabled people could have been regarded as a gesture of helping the disabled.
o They said they were sometimes regarded as a sexually deprived group and this had the implication that their partners could be careless about the need to have protected sex.
o Sometimes able-bodied people could have unprotected sex with them but when they discover that they have been infected with a sexually transmitted disease or HIV they are blamed or the able-bodied people may refuse to apologize or feel bad about it as society tends to despise people with disabilities
o Relatives of able-bodied partners could sometimes fail to approve of marriages between an able-bodied person and an individual who is physically disabled and that tended to narrow their choice of partners
o They said most of the people with severe physical handicaps in society tended to marry men with more than one partner or women who had more than one partner.
o Society could expect them to marry people with deceased partners, spouses, or promiscuous people as long as the able-bodied individual convinced the relatives of the individual with a disability that they loved them
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Cerebral Palsy
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o They said their partners fitted the condoms, dressed them, bathed them, and directed the sexual activity.
o The partners could choose to remove condoms during the sexual activity and they could hardly stop them as they were physically uncoordinated.
o They said they largely depended on others in sexual relations and that limited personal control in terms of safe sex
o Relatives were said to interfere with their relationships at times as some of the relatives could feel that the individual with cerebral palsy could be abused by their able-bodied partner.
o They found it difficult to initiate a divorce even if the relationship posed an HIV and AIDS risk
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