Information Needs and Resource Utilization by People Living with HIV/AIDS



INFORMATION NEEDS AND RESOURCE UTILIZATION BY PEOPLE LIVING WITH HIV/AIDS: A CASE STUDY OF ESUT TEACHING HOSPITAL PARKLANE ENUGU

This chapter reviews the available related literature on information needs and resources utilization by people living with HIV/AIDS under the following headings.

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2.2   Conceptual framework

2.2.1 HIV/AIDS

2.2.2 Information needs of people living with HIV/AIDS.

2.2.3 Information used by people living with HIV/AIDS

2.2.4 The extent to which information resources encourage and support the people living with HIV/AIDS to take positive action to deal with HIV/AIDS.

2.2.5 The benefit driven from the use information resources by people living with HIV/AIDS.

2.2.6 The barrier to access and utilization of information resources by the people living with HIV/AIDS.

2.2.7 Strategies to overcome the barriers.

2.3   Empirical studies

2.4   Summary of the Reviews

 

2.2  Conceptual framework

2.2.1      HIV/AIDS

HIV stands for Human Immune deficiency Virus.

HIV is a virus that weakens the body immune system which causes AIDS. AIDS stand for Acquired Immune Deficiency Syndrome. AIDS is a disease that hurts the body’s ability to fight infections and diseases.

According to Piot, Kapita and Ngugi (2010) AIDS was first recognized in 1981 in the United State of America in young homosexual man.

Claxton and Harrison (2013) reported that HIV/AIDS disease is caused by a virus that weakens the immune system of the body. According to them, it was first identified in Paris in 1983 and was called Lymphia denopath associated virus (LAV). According to World Health Organization (WHO) 2011, researchers from USA identified the virus in 1984 called it Human T-cell Hyumphotopic Virus type III (HITV iii). The international committee on taxonomy of viruses recommended the use of the term Human Immune deficiency virus (HIV).

Colebienders R and Wabitsh (2013) describes HIV as a disease that can be transmitted through the blood, sexual fluids, and breast milk of HIV infected person, childbirth, mother to child during pregnancy. Also there are more common way that HIV can be transmitted, having unprotected sex with a person who has HIV, syringes, blood transfusion from HIV positive blood donor, which is very unlikely today because blood is being properly screened for HIV/AIDS. HIV stays in the body and slowly destroys the defense system from fighting of certain infection. These infections are usually controlled by a healthy immune system, but they can cause problem or even be life threatening in some one with AIDS. According to them only a blood test can determine of a person is infected with HIV, but if a person test is HIV positive, it does not necessarily mean that the person has AIDS.

The AIDS virus has been linked to the moral and sexual decadence prevalent in the west such as homosexual. According to the Association for Survival Progressive Intervention (2009) United Nation statistics indicate that 33.4 worldwide and 22.8 million or 68% are from sub Saharan Africa. According to Piot , Kapita , and Ngugi(2009) AIDS occurs when a person with HIV is weakened, beginning to fall ill, people infected with the virus may have different symptoms like, persistence cough, fever lose of weight, tuberculosis, have skin infections, virginal itching and prolonged diarrhea. According to them, these symptoms can also be seen in a person who does not have HIV/AIDS. A person infected with HIV may receive an AIDS diagnosis after developing one of the CDC defined AIDS indicator illness. A diagnosis of AIDS is made by a physician according to the CDC AIDS case definition. Test for the HIV antibodies are the surest way of determining if someone has HIV/AIDS.

According to Merchac et al (2011) HIV is a very small germ that is too small to be seen by an ordinary microscope. It is so small that there are approximately 230,000 at the drop. It only takes one of these viruses to enter the body for someone to be infected and later develop AIDS. Whereas Roberts  (2010) opined that AIDS is a viral disease that attacks and break down body’s immune system, heading to serious and usually infection to form sarcoma.

Merchak and Paul (2013) stated that in countries with high prevalence, the greatest numbers reported cases occurred among youth of age bracket 15-34 years for women and 25-44 years for men”. In Nigeria for men, the age bracket is 19-25 years and girls 15-20 years are worst affected with the virus. Pat (2009) stated that “some times HIV/AIDS patients are denied access to health care suffers segregation in school, hospital, place of worship (churches and mosques). He further said this has prevented access to true information of the dreaded disease. Brain Atioo, USAID Administration (1999) states that “life expectancy which has been steadily on the raise for the last decades will drop to 40 years or less in nine (9) sub Saharan countries by 2013” world bank estimate that AIDS could shrink some African economics by up to twenty five (25) percent over the next fifteen years. The report further stated that the way in which African deals with AIDS will to a large extent determine whether they remain a poor continent or grow. That is Kenya, at the end of Kenyata Avenue, when they lose some one, it takes sometime to fill the gap. According to the report, forty (40) of the departments, four thousand, two hundred (4,200) employees died of AIDS related causes including some of its brightest young graduates. The work force is aging because they are losing a generation of professionals.

In South Africa, and Nigeria HIV infected men believe they can rid themselves of the virus by having sex with a virus uninfected women or sexual partner. According to Thabo Nbeki, the South Africa President in one of his interview with (VOA news) said that AIDS is not caused by HIV, even if it existed at all. That it is caused by poverty, hunger and illiteracy; it is nurtured by the heavy burden of debts and yoke of neo-colonialism and imperialism perpetuated by the western countries and its allies and the stooges planted in position of authority and power.

As far as AIDS is concerned, African countries especially sub Saharan African which incidentally have the poorest nations, have suffered the most devastation natural disasters have enhance the spread of AIDS by breaking apart community life and disrupting stable relationship.

In Nigeria, AIDS has become a major public health problem or crisis. The spread of AIDS to and within Nigerian has been well established by 2001 Nigeria was said to be occupying the 27th position in the hierarchy of the worst infected AIDS nation.

2.2.2      Information needs of people living with HIV/AIDS

Since the earliest days of the epidemic, information has been understood as a critical resource in effort to prevent transmission of HIV, manage the complication that accompany the disease, and prolong people living with HIV/AIDS lives. Information scientists have provided analysis of the distinctive qualities of the information associated with the epidemic.

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Hubers and Gillaspy (2010) assert that the current knowledge of HIV/AIDS is a “disease body of knowledge, full of the same complexities that overlapping role of creator, provider and seeker”. In 2008, Ginn identified an increasing overlap among the information functions and responsibilities for HIV/AIDS information. Service Organization, Health Professionals, Consumers, Government and Media. Huber and Gillaspy later used this media to describe a non-traditional scientific communication model of HIV/AIDS in consumers that is people living with HIV/AIDS (PLWHA) because information producers ie (health professional) act as information consumers.

This convergence of information has had different effects. On the other hand, it has resulted in relevant information for service providers who work to combat the epidemic at what Huber and Gillaspy (2010) call multiple levels from individuals and local communities to the public at large. As much as HIV/AIDS information is published and distributed outside the traditional channel, is not catalogued or indexed and us often not part of standard clinic information resources. It is gray literature, “information produced on all levels of government, academic, business and industry in electronic and print formats not controlled by commercial publishing, that is, where publishing is not the primary activity”.

According to Grey (2013) access to HIV/AIDS treatment fact, sheets pharmaceutical company brochures, newsletters and other gray literature can be difficult given its limited dissemination and integration into the usual streams of health information. as a result, potentially powerful information does not always make it into the hands of individuals and organizations that could benefit from it.

Previous studies have shown that HIV/AIDS service providers perceive the information needs of their client as failing into two broad categories media information needs and social service information need. Huber and Cruz (2011) pose a more comprehensive categorization of information needs that varies from drug, wellness and financial information to information on social activities, HIV/AIDS disclosure, death and dying, religious – spiritual topics. But the experience of PLWHA suggested other kinds of information needs related to the charity of information and its match to the community that are not represented in this framework.

 

2.2.3      Information resources used by people living with HIV/AIDS

       In the opinion of Okwilagwe (2009) information is input which reduces the level of uncertainty in any decision process; it is crucial factor for a healthy life. Access to quality health information is critical to many factors of health care design and delivery. Health information is published and unpublished knowledge on all aspect of health and health care. Individual seeks health care information for reasons ranging from curiosity to self diagnosis and treatment. It is imperative that they should be adequately empowered with information to make the right decision pertaining to their health. The role of information to PLWHA cannot be ignored, information is vital to relieve pains and decision fort, both physical and mental. As posited by Peterson and Obleye (2010), information helps extend and improve the quality of reducing viral load. The absence of information can lead to interrupted treatment and self mediation.

Okwilagwe (2009) identified the information resources used by people living with HIV/AIDS as follows:

  1. Newspapers
  2. Magazines
  • Palm felts
  1. Television programme
  2. Radio programmes
  3. Counseling
  • Seminars and
  • Workshops

Huber and Cruz (2011) find that AIDS newsletters, magazines and personal physicians are the most popular sources of information for PLWHA, followed by information from friends, pamphlets and brochures. The interest has also become a useful resource for some PLWHAS. In study of internet used and coping, Reeves (2013) finds that PLWHA use the internet for locating general and specific health information, making social connections, fostering sense of community, advocating, escaping from stress of living with the disease. PLWHA who use the internet for health information seem informed about HIV/AIDS and report more use of active coping strategies, including information seeking and greater social supports (Malchman, Luke and Chemy, 2009).

Hogan and Palmar (2013) identified media health officers, libraries, family and friends, Non Governmental Organization (NGOs), newsletter and magazine, journals, workshop/seminars, pamphlets, ministry of health, NACA/SACA office and internet as sources of information to PLWHAS.

 

2.2.4      The extent to which information resources encourage and support the people living with HIV/AIDS to take positive action

Mental health professionals through the first decade of the epidemic saw that many PLWHA felt compelled to sort through potentially overwhelming amount of HIV information to keeping with and stay current on issues important to their health, while others avoid reading or hearing about HIV/AIDS. Grim and Ginn (2009), information about PLWHA and their fear f becoming immobilized by bad news.

More recently, health communication researcher have shown that PLWHA use active information seeking, passive information seeking, experiential information and information avoidance strategies to cope with and manage the uncertainty surrounding their medical, social and personal situation. While information seeking is a means to reduce or increase uncertainty, avoiding information can help PLWHA maintain a desired level of uncertainty about aspects of their condition.

Huber and Cruz (2011) information is very important to PLWHA and good information is vital for the care and treatment work as it enables the PLWHA and the care givers to make joint decisions about what will be appropriate and effective. The relevant information need to be up to date and gives PLWHA a  clear idea about their situation and possibilities, it should be communicated in a way that will be understood by the PLWHA, the PLWHA needs to know the availability of treatment, give messages of hope as there is hope, more people get tested, if they are well enlighten about the disease they will find it, easy in accessing treatment and will feel good about planning for future because they will become more visible and speak out about positive living counseling, nursing care etc.

PLWHA and those living with them and caring for them need up to date information on the range of issues for example, caretakers needs information to them understand the progression of HIV and to know what advice to give, PLWHA needs information to enable them seek early treatment for common illness. Counseling can be very useful to anyone in a difficult and stressful situation. This involves anyone going for an HIV test; anyone diagnosed HIV positive and care givers looking after someone who is ill.

Nigeria has an estimated,

The role of information for PLWHA cannot be ignored. Information is vital to relieve pain and discomfort, both physical and mental (Edewor, 2010). As posited by Pesterson and Obileye (2009), information helps extend and improve the quality of life by reducing viral load. The absence of information can lead to interrupted treatment and self-medication (Colebunder et al, 2009). Access to quality health care information and knowledge by PLWHA is very essential.

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2.2.5      The benefits derived from the use of information resources by PLWHA

People living with HIV/AIDS have great emotional needs and require support for coming to terms with their infection. Some of the feelings that people with HIV/AIDS experience include shock or anger of being diagnosed, fear over how the disease will progress and fear of isolation by family and friends, and worries about infecting others. By bearing such a heavy emotional burden it is not surprising that depression is twice as common in people with HIV compared to the general population. Relatives and friends will also be deeply affected by what the HIV – positive person is going through but with the use of information resources the people living with HIV/AIDS have derive a lot of benefit from the information resources they used.

Selman (2011) identifies some major benefits drive from the used information resources as follows:

  • With the use of information resource, the PLWHA are able to know and understand that even if one is tested HIV/AIDS positive he or she can live longer and can live a normal life like every other human being.
  • The information the PLWHA get helps them go for the antiretroviral with out fear of stigmatization and discrimination by their family and friends.
  • It helps them to know that even with HIV/AIDS you can play an active and influential in shaping an effective response to the society.
  • This enables the people living with HIV/AIDS to be more enlightened and that registering for the antiretroviral but not adhering to it will be more dangerous to their health.
  • The information used by PLWHA also helps them to know that good nutrition is very important to their health no matter how little it is.
  • The information resources used by the PLWHA helps them to know what to do live longer. i.e. they are not suppose to smoke, have unprotected sex, drink alcohol for all these are dangerous to their health, they also know that they should keep to the doctors instructions, keep to appointment with their doctors and taking their medicine as it has been prescribed.
  • They know that they are to exercise regularly to stay strong, fit, enough sleep and rest.

 

2.2.6      The barriers to access and utilization of information resources by the PLWHA

       Access to quality healthcare information and knowledge by PLWHA is very essential. In a survey carried out by Erica (2013) on barriers to equitable access to health information, major barriers were lack of governmental support, information infrastructure and workforce capacity, and the high cost of accessing up to date, timely and relevant information.

Hogan and Palmer (2010) identified lack of information, resources difficulties in understanding the available information, lack of trust and lack of applicability as barriers to using HIV information.

Commenting on barriers to access of health information by PLWHA in Nigeria, Edewor (2010) identified the major barriers to access of health information by PLWHA in Nigeria as shortage of qualified personnel, inexplicit nature of information materials, inadequate funds, and distance of ARV trial centers, stigmatization and discrimination, absence of HIV/AIDS data or information network and ineffective communication strategies.

High level of illiteracy has being identified as one of the major problem militating against access and utilization of information by PLWHA (Ukaechi, 2010). She further explained that some of the PLWHA are illiterate as such they cannot read and write as a result of this, they cannot be able to utilize some of the HIV/AIDS information resources made available to them such as journals, newsletter, magazines, pamphlets etc.

Nkechi (2011) identifies absence of medical and public library as one of the major factors affecting access and utilization of information by PLWHA. According to her libraries have common functions of acquisition, organization, storage and dissemination of information contained in books and non books materials. She maintained that the library cannot grant good health to users but the library can provide materials which users could explore and live healthy lives. This could be done through one of the functions of the library which is to disseminate information. She argued that there are various publications on HIV/AIDS both at international and local levels the library acquires these materials and makes them available to users through display of books, pamphlets and posters on HIV/AIDS. She therefore concluded that absence of these libraries posed a problem of lack of access and utilization of information by PLWHA.

Absence of Radio/Television programmes on HIV/AIDS in local languages also posed a problem of access and utilization of information by PLWHA. Since some of the PLWHA are illiterate they hardly understand the national language (English) and most of the programmes on HIV/AIDS organized on radio/ television are in the nation language (English) as such some illiterate people with HIV/AIDS who cannot understand English always faced with the problem of utilization such programmes (Utor 2004).

 

2.2.7      Strategies to overcome the barriers of access and utilization of information by people living with HIV/AIDS

Different authors/scholars had identified solution to problem of access and utilization of information by PLWHA some of the solutions are highlighted below.

Nkechi (2011) opined that information materials should be published in simple languages which one can read and understand easily. Organization of radio/ television programmes on HIV/AIDS in local languages to enable the people who cannot understand English to utilize the programmes (Utor, 2010).

Establishment of medical/public libraries to provide information materials on HIV/AIDS, these libraries must provide not only books and other printed materials but also a lot of non-print and audio-visual materials because these people obtain and understand information better through oral, visual and auditory means of communication (Nkechi, 2011).

Edewor (2010) opines the recruitment of qualified personnel, provision of adequate funds, establishment of more ARV trail centres in the communities, avoidance of discrimination and stigmatization, effective communication strategies should be employed in dissemination HIV/AIDS information and provision of HIV/AIDS data information exchange network as strategies to overcome the problem of access and utilization of information by PLWHA.

 

2.3  Empirical Studies

       Hogan and Palmer (2013) conducted a study on information preferences and practices among people living with HIV/AIDS in Nigeria. This was done through a self-administer mail study survey distributed nationwide at clinics, drugs treatment centres and other Aids service organization. The 400 respondents involved in the study preferred getting information from people including health professionals, family and friends and considered people that are most trustworthy useful, understandable and available information sources. Forty-three percent selected doctors as their most preferred source. The internet was not rated highly overall but was preferred by those with more education or living in metropolitan areas. Seventy two percent said, they actively search for HIV/AIDS related information, and 80% said they give advice or tell others where to get such information. However, 71% agreed that it is easy to feel over whelmed by information, and 31% agreed that not seeking information can be beneficial.

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Edewor (2010) carried out a study on access to health information by people living with HIV/AIDS in Nigeria. The survey research design was adopted for the study. The population of people living with HIV/AIDS was drawn from the south-south geopolitical zone of Nigeria. The instrument used for data collection was a questionnaire. The questionnaire was administered by a research assistant to PLWHA who volunteered to be respondents for the study. A sample 400 people living with HIV/AIDS was randomly selected. Data was analyzed using descriptive statistics. The study therefore revealed that, in spite of research and intervention efforts for prevention and treatment of HIV/AIDS, access to quality health information by PLWHA in Nigeria constitutes a great barrier. The study identified barriers to equitable access to health information to include lack of governmental support, information infrastructure and workforce capacity and high cost of accessing up to date, timely and relevant information.

Akusa (2011) conducted a study on the information needs of people living with HIV/AIDS in Enugu State.

A survey research method was use for the study stratified and simple random sampling techniques were used to obtain a sample that will be a representation of the entre population. The instruments used for data collection was questionnaire. The study revealed that nutrition, human rights, non-governmental organization, technical and vocation training, antiretroviral (ARV) medical care and support, drug availability and affordability as are as in which people living with HIV/AIDS need information. The study identified medical health officers, libraries, family and friends, journals, newsletters and magazines, workshops/seminars, pamphlets, ministry of health, NACA /SACA office and the internet as source through which PLWHA obtain information.

Finally, the study identified shortage of qualified personnel, inexplicit nature of information materials, inadequate funds, distance of ARV trail centers, stigmatization exchange network and ineffective communication strategies as problem militating against access and utilization of information by PLWHA.

Ezeike and Ugwuja (2010), city profile of HIV/AIDS in Enugu State, Nigeria. The study used was survey research method. The study commenced with desk reviews and a pilot survey of the city of Enugu. This enables the researcher to identity stakeholders for the city consultation and brief them about the vision of the African Network of Urban Management Institution (ANUMI) and the city consultation on AIDS. It also afforded the researcher the opportunity to plan the data gathering required for the city profile report.

The researcher administered questionnaire among PLWHA at ESUT teaching Hospital park lane, Enugu. Another set of questionnaires was administered among stakeholders involved in policy making with regards to AIDS. This includes officials of the Enugu State ministry of Healthy and Human Services, etc. The data from the questionnaires was complemented with focus group discussions with PLWHA to capture their perspective about the disease and its impacts on their lives.

Descriptive analysis of the data including case summaries of the questionnaire variable were carried out and the results were used to develop a comprehensive profile of AIDS in Enugu.

The major findings of the study include the following. The study revealed that PLWHA needs information concerning: cheaper drugs, better clinical services, Basic needs such as food, clothing etc, Employment, availability of drugs, financial assistance and awareness/education to reduce stigmatization, moral support and government aid.

The study also identified friends, relatives, neighbours, employers, colleagues and health workers, radio, television, internet, newsletters and pamphlets as sources of information to PLWHA.

Finally, the study identified inadequate counseling service for PLWHA that is pre counseling and followed-up by counselors, poor data management policy of HIV/AIDS studies, absence of radio/television programmes on HIV/AIDS, absence of libraries and lack of political will as the major problems militating against the access and utilization of information by PLWHA.

 

2.4  Summary of the reviews

       While reviewing the literature, the researcher consulted textbook, seminar papers, articles from the internet, electronic journals and other relevant publications as well as other research work conducted on information needs of PLWHA.

From the literature reviewed, it was gathered that HIV/AIDS disease is caused by a virus that weakens the system of the body, it can be spread through the body’s fluid such as vaginal fluid, semen, blood and breast milk, and it may be passed from one person to another by more common ways like having unprotected sex with someone who is infected with HIV/AIDS, sharing of needles or syringes, razor blade etc with someone with HIV/AIDS, pregnancy and labour birth and breast feeding if a mother is HIV positive etc. Information to PLWHA cannot be ignored, information is very vital to relieve pains and discomfort, both physical and mental. PLWHA needs information areas such as care and support, antiretroviral (ARV) medical, human right, drug available and affordability, nutrition etc. Sources through which PLWHA got information includes radio/television programmes, newsletters, journals, pamphlets, family friends, health workers, NACA, SACA office, ministry of health, the internet etc. Relevant, appropriate and timely information gives PLWHA a clear idea about their situation and possibilities. It should be communicated in a way understood by them, they need to know that the availability of treatment gives message of hope.

In addition, the literature review gathered the barriers to access and the utilization of resources by PLWHA include high level of illiteracy, absence of medical/public libraries, absence of radio/television programmes in HIV/AIDS in local languages, shortage of qualified personnel, inexplicit nature of information material, the ineffective communication strategies etc. And establishment of public/medical libraries organization of radio/television programmes on HIV/AIDS in local languages, recruitment of qualified personnel, information materials should be published in simple languages which one can read and understand easily, employment of effective communication strategies was gathered as the strategies to overcome the problem militating access and utilization of information resource of PLWHA. Finally a review of other research works conducted that are similar to the topic was reviewed.

Online Resources: Information preferences and practices among people living with HIV/AIDS: results from a nationwide survey

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