CHAPTER III RESEARCH METHODOLOGY Research design is the structure of any scientific work. It gives direction and systematizes the research. It ensures that the evidence obtained enables us to answer the initial question as unambiguously as possible. HIV/AIDS is increasingly being recognized as not merely a medical problem, but a social problem as well. The latter aspect requires an understanding of the determinants of socio cultural aspects related to the disease, risk and influencing behavior and factors associated with the management of the disease process, issues of treatment, adherence and prevention of secondary transmission. Infection and the subsequent progression of illness which give a broad range of personal experiences to negotiate among affected group. This being the scenario of HIV disease, HIV affected women suffer a great amount of stigma, discrimination, lack of social support and many psychosocial issues. Being the main care givers and home-makers, they have to take on an extra burden when other family members fall ill. For HIV positive women, coping with their own illnesses and facing up to the stigma of the disease are especially challenging tasks. Psychosocial issues in women with HIV/AIDS have a tremendous impact on their quality of life as well as their opportunities for treatment. Social and emotional stress, in turn, may have a direct relationship to disease status and progression of HIV infection. In this scenario lot of research questions come in our mind, that is whether HIV woman are aware of the significant effect of the disease. What is her awareness level regarding the disease HIV/AIDS. Does she have adequate medical care? Is she able to avail the same? What are the problems she is facing because of the HIV both physical and psychological? What are the other problems she is facing because of HIV and being a woman? What about her children HIV status. How does she manage her economy? What is her socio economic background? How about her social support? What is her perceived quality of life etc are some of the pertinent questions come in our mind which the study intends to cover with specific objectives. 98
3.1.1 Study Objectives: The Objectives of the study are: 1. To study the socio-economic status of the respondents 2. To investigate the respondents awareness level regarding HIV 3. To find out the general health condition of the respondents 4. To know the perceived quality of life of the respondents 5. To find out the respondents level of social support system 6. To determine the specific problems faced by the respondents due to the HIV status. 7. To make suitable suggestions to strengthen the quality of life and social support systems of the respondents 8. To develop a sociological model of group based intervention for empowering women living with HIV 3.2.1 Hypothesis: 1. There is a no relationship between the respondents disclosure status and their quality of life 2. There is no association between membership in positive women network and physical health of the respondents 3. There is no association between membership in positive women network and psychological well being of the respondents 4. There is no relationship between duration of disease and quality of life of the respondents. 5. There is no relationship between number of children and quality of life of the respondents. 6. There is no relation between place of residence and quality of life of the respondents. 7. There is no relation between number of years disease status and general health condition of the respondents 99
8. There is no relation between number of years disease status and presence of social dysfunction among the respondents 9. There is no difference between membership in positive women network and general health condition 10. There is no difference between membership in positive women net work and social support 11. There is no difference in membership in positive women network and overall quality of life, general health and social support of the respondents. 12. There is no relation between the respondents socio-economic status and quality of life. 3.3.1 Concepts and Definitions of Terms As Used in this Study: HIV (Human Immunodeficiency Virus) is a virus that is transmitted from person to person through the exchange of body fluids such as blood, semen, breast milk and vaginal secretions. AIDS stands for Acquired Immune Deficiency Syndrome. The term acquired shows that AIDS is not inherited but obtained from some microbe outside the body. Immune Deficiency means that the immune system of the body is weakened considerably. A syndrome is not so much a disease as it is a collection of symptoms. AIDS indicates the end stage of the HIV infection. Awareness on HIV/AIDS: Awareness of HIV refers to an understanding of the simple facts about the illness in the areas of cause, spread, prevention, and management. Mental Health: Mental health refers to the overall well-being of a person, including a person's frame of mind, emotions, and behavior. Social Support: Social support in this study refers to services and care received by the patients from family, friends and community, in the form of physical, material, interactional and emotional support. 100
Quality of Life: (QOL): The WHO definition (1995) presented in the context of HIV has been adopted for the study and has been defined as follows. An individual s perception of his/her position in life in the context of the culture and values systems in which he/she lives, and in relations to his/her goals, expectations, standards and concern. HIV Positive Women: In this study HIV positive woman includes females from Chennai Region who are 18 years and above diagnosed as HIV, who are attending the programs of Nalamdana welfare organization. Chennai Region: In this study Chennai Region includes the city s urban centers and also the fringe areas including Extended Chennai Limits, having the Chennai pin code. 3.4.1 Research Setting: The study was conducted with the help of a Nongovernmental organization called Nalamdana that was started in the year 2004. This Organization works in the field of health and women s welfare particularly focusing on creating awareness among people on health using modern communication techniques to give information about health to socially and educationally backward groups. Response-driven participatory street theatre, interactive games, small group workshops, television serials etc are some of the strategies they adopt to spread health awareness to their audience. Nalamdana explores the full range of communicative techniques to reach out to people. Nalamdana's "Are You Well" Project at Tambaram, focuses on care and support for the patients of the Government Hospital of Thoracic Medicine, which is one of the largest public hospitals in Asia catering to both TB and HIV patients. Under HIV/AIDS care project, Nalamdana offers role plays on issues relevant to People Living with HIV and AIDS (PLWHA). It has "Thendral",(2007) a radio station offer programs for seven and a half hours daily, six days a week on the entertainment - education platform in Tambaram hospital's 18 TB and HIV wards and the OP area. They also conduct weekly support group meetings for women with HIV positive on every Tuesday and Thursday. Nalamdana encourages and also involves 101
PLWHA to participate in the role plays and radio programs. These performances highlighted issues on HIV awareness, mitigating stigma and dispelling myths and misconceptions; emphasizing drug adherence and inclusion of women in treatment access, familial and social issues faced by those affected by HIV. Recently, thendral has come out with new program to meet the needs of new HIV patients who generally stay at Tambaram for two weeks while their antiretroviral medications are calibrated. They have awareness module covering topics like What is HIV?, What do my medications do in my body?, Why is drug adherence so important?, And how can I best handle the stigma of HIV/AIDS when I return to my home village etc are some of the pertinent area they broadcast through the Mothers Voices which is devised by YRG Care and AIDS Project Los Angeles. The projects are funded by UNAIDS, UNESCO, and the Ford Foundation, with ongoing support from the Tamil Nadu State AIDS Prevention and Control Society (TANSACS). The researcher interviewed the respondents from HIV positive women who were beneficiaries of Nalamdana organization who attend regular meetings conducted by the network organization which work for the HIV positive women. Nalamdana organization hosts meeting every week on Tuesday and Thursday under their auspices at Tambaram. The meetings are addressed by trained field worker from either TANSAC or from Positive Women Network (PWN) group which works for positive women. 3.5.1 Research Design: The research design of the study is descriptive cum explanatory. As a descriptive study the researcher describes the characteristics of the HIV positive women in the form of following variables: Demographic profile of the respondents, place of residence, educational background, marital status, type of family, socio-economic status, duration of illness, disclosure status, HIV status, general health condition, quality of life and social support. Thus the design primarily attempts to describe the extent and magnitude of the above mentioned phenomena. As an explanatory study, the research attempts to explain the relationship among variable like awareness, 102
education, disclosure, and general health condition, and quality of life, social support within the dimensions and across them. Hence the study is explanatory in nature. Considering these aspects, the researcher has termed the design of the present study as Descriptive explanatory. Descriptive explanatory research design model has been presented with clarity by D.K. Lal Das (2005), According to him descriptive studies as the name suggests describe as accurately as possible the characteristics of a group of people or a community Where as the purpose of explanatory research design is to explain why? In explanatory research design the research goes beyond focusing on a topic or portraying it and looks for causes and reasons. Therefore in this study the researcher has not only described the socio-economic factors, quality of life, mental health and social support and psycho-social problems of the patients but also made an attempt to study the interrelationship between the variable and to understand the cause and reasons for the existing situations. 3.5.2 Sources of Data: Data was collected through both primary and secondary sources. Primary data was collected using structured interview schedule method from the HIV positive women who attended the meetings in the net work organization. Secondary data was collected from various external sources such as agency records, books, magazines, newspapers, internet, and journals. Field source of information was collected from the social workers and the community animators from Nalamdana 3.5.3 Type of data: The study has been quantitative in nature. Appropriate statistical tools have been used to assess the information gathered through structured interview schedule and standardized scales. Qualitative techniques like observation, in-depth interviews, were used to substantiate the information collected through schedule. 103
3.6.1 Selection of Respondents: The population of the study comprised of women infected with HIV. The respondents were the beneficiaries of Nalamdana organization, which works for the cause of HIV positive women. The Organization regularly hosts two weekly meetings on every Tuesday and Thursday at Tambaram area, from 2 P.M to 5 P.M in the evening hours. The researcher availed this opportunity and interviewed the prospective patients attending the meeting. Patients who came for the meeting were those who availed the services of the local governmental hospital which is the main Referral hospital that treats people with TB and HIV from all over Tamil Nadu and neighboring States. From September 2010 to July 2011, 512 patients had attended the network meeting conducted by the Nalamdana organization. 234 patients were from Chennai Region and the rest were from Tamil Nadu and Andhra. Keeping the norms and guidelines of research ethics, prescribed for social sciences research in the field of HIV/AIDS, only those HIV positive women who were willing to be part of the study and who hailed from in and around Chennai Region alone were taken for the study. Informed consent was obtained. A total of 210 patients were interviewed. Incomplete forms were rejected. 204 respondents were selected for the study. The same was processed for further analysis. 9 patients were too sick to answer and 15 patients were not willing to participate in the study. The inclusion criteria was women 18 years and above, with HIV positive status, hailing from in and around Chennai region, and willingness to participate in the study. 3.7.1 Tools of Data Collection: The tools of data collection were decided keeping the study objectives in mind. Three Standardized scales and an interview schedule were utilized for this purpose. 104
3.7.2 Interview schedule (Annexure ) The researcher designed a detailed interview schedule based on the objectives of the study. The interview schedule comprised of questions that were open as well as close ended. After several field visits and interaction with positive women, NGO members and program experts in the field, the Researcher prepared the interview schedule. The interview schedule consisted of 6 major areas. 1. Demographic information 2. Socio-economic status 3. Awareness level regarding HIV infection 4. History of HIV infection and diagnosis 5. Disclosure status 6. Psycho-social, economic and cultural issues. Measurement scales: Totally 3 measurements scales were used to assess the respondents general health condition, quality of life and the extent of social support. These scales have been multicultural tested and have been already studied in the Indian context. The details are presented below. 3.7.3 General Health Questionnaire - GHQ 28: The General Health Questionnaire (GHQ) screens for non-psychotic psychiatric disorders. General Health Questionnaire (GHQ) is an instrument developed by World Health Organization group to measure the current mental health status of an individual who is under medical care for a long period (Goldberg 1970). It has been extensively used in different settings and different cultures. The GHQ is a 28 item self-administered questionnaire used for the detection of psychiatric distress related to general medical illness. It requires respondents to indicate if their current state 105
differs from his or her usual state, thereby assessing change in characteristics and not lifelong personality characteristics. The tool has been used successfully in community settings and non-psychiatric clinical settings in many countries. The GHQ-28 is one of four versions of the GHQ. This self-administered questionnaire focuses on two major areas: 1) the inability to carry out normal functions and the appearance of new and distressing phenomena. (Goldberg 1978) The questionnaire was originally developed as a 60-item instrument but at present a range of shortened versions of the questionnaire including the GHQ- 30, the GHQ-28, the GHQ-20, and the GHQ-12 is available. The scale asks whether the respondent has experienced a particular symptom or behavior recently. Each item is rated on a four-point scale (less than usual, no more than usual, rather more than usual, or much more than usual); the most common scoring methods are bi-modal (0-0-1-1) And Likert scoring styles (0-1-2-3). The instrument has four sections. Each section has seven questions part A of the scale will assess the somatic symptoms, part B of the scale focus on the presence of anxiety/insomnia, Part C of the scale focus on the occurrences of social dysfunction among patients the last section deals with the presence of severe depression among patients. In addition to providing a total score, sub-scores for somatic symptoms, anxiety, social dysfunction and severe depression can be generated. The question was read and the patients were asked to indicate their standing in each question. The GHQ-28 yields four sub-scores and a total score. Scores were calculated by summing up the item responses. Subscale scores range from 0 to 7, with higher scores indicating a greater probability of a psychiatric distress. Total scores range from 0 to 28. Total scores that exceed 4 out of 28 suggested probable distresses. Studies done in India using GHQ 28 Soumya Deb et.al 2010. 106
3.7.4 Social Support: Duke UNC Functional Social Support Questionnaire 1988. (FSSQ) Social support in general, the availability of help from family or friends, is positively associated with medication adherence. Seeking social support is one strategy used to cope with HIV-related stress. Managing an HIV diagnosis may be facilitated by social support that may be instrumental (e.g., providing transportation or monetary assistance) or emotional (e.g., providing positive feedback or giving advice). The burden of HIV-sero positivity can demand informal and institutional support both for the persons living with HIV and their partners (Folkman, Chesney, & Christopher- Richards, 1994). Social support has been associated with positive emotional and health outcomes for people living with HIV (Kalichman et al., 2003). Yet, the social unacceptability of an HIV diagnosis may lead to self-imposed isolation and withdrawal (Green, 1995). Stigma, discrimination and other psychosocial issues lead to reduced level of social support from both friends and family members. In order to know the extent to which those women are having social support the Duke UNC Functional Social Support Questionnaire (FSSQ) was used to measure the social support received by the respondent. The Duke-UNC Functional Social Support scale (FSSQ) is an eight-item instrument (Broadhead et al., 1988). There are five potential answers to each questions ranging from "As much as I would like" to "Much less than I would like." All questions must be answered to complete the scoring process. Responses to each question are scored on a 1 to 5 scale. "As much as I would like" receives a score of 5 and "Much less than I would like" receives a score of 1. The scores from all eight questions are summed (maximum 40) and then divided by 8 to get an average score., the higher the average score, the greater the perceived social support. The measure was selected because it is brief, simple to administer, and has acceptable reliability and validity. Cronbach s alpha coefficient for this scale is 0.81. Indian studies Kumar Neeraj 2011, 3.7.5 Quality of Life: WHO ( 1995,1996) Quality of life has been defined as the degree to which a person enjoys the important possibilities of his/her life in three broad domains being, belonging and becoming. 107
Quality of life is how much a person can take part in, and enjoy, a range of life experiences. This can include life experiences relating to one s physical, psychological and spiritual being. Someone who has a high quality of life is able to enjoy his or her physical body, psychological state and spirituality. (Source WHO: 1995) Since HIV is considered as a non curable chronic disability the patients are expected to live with the disease status so the quality of life of these people is very important to measure. World Health Organization has developed a standardized scale WHOQOL BREF, to measure the quality of life of people with chronic disability. WHOQOL BREF is an individual s perception of her position in life in the context of the culture and value systems in which she lives in relation to her goals, expectations, standards and concerns. (WHOQOL 1996). WHOQOL BREF 1996 is an instrument to assess the perceived quality of life of long diseased patient with 26 questions in 5 point scale the answer range from very poor to very good. If a patient score more in the scale it means he has better quality of life. The question has included all areas physical, psychological, environment and social relation which are assumed to influence the patient s quality of life outcome. There is question on the overall quality of life from subject point of view. The present study has utilized this standardized multiculturaly tested scale for the purpose of finding the quality of life of the HIV positive women from their perception. The WHOQOL-BREF is based on a four domain structure: 1. Physical domain which includes activities of daily living, dependence on medicinal substances and medical aids. Energy and fatigue, mobility, pain and discomfort, work capacity etc. Domain two is Psychological which comprises of question related to Bodily image and appearance, Negative feelings, Positive feelings, Self esteem, spirituality/religion/personal beliefs, Thinking/learning/memory and concentration Domain three is Social relationships which has questions related to the kind of Personal relationships, Social support and Sexual activities, Domain four environment which include, Financial resources, Freedom, physical safety and security, Health and social care: accessibility and quality,home environment, 108
Opportunities for acquiring new information and skills Participation in and opportunities for recreation/leisure Physical environment etc. In contrast to many other quality of life instruments, WHOQOL includes a domain on environment. This is considered necessary as environment plays a major role in determining health status, mediating disease pathogenesis and limiting or facilitating access to health care. Like all other domains in WHOQOL, environmental domain, is also assessed by a subjective self report with the underlying belief that even if subjective reports are at a variance with objective reality, it is the former that determines the quality of life. It is thus, a generic instrument that could be used in general population to assess a wide range of domains applicable to a variety of health states, conditions and diseases. Cronbach s were acceptable (>0.7) for Domains 1, 2 and 4 i.e. physical health 0.82, psychological 0.81, environment 0.80, but marginal for social relationships 0.68. Indian studies S.M. Skevington et.al, (2003) S. Saxena, et al (1998). ICMR studies These scales are multiculturaly tested standard tools, which were already used in the similar setting by other researchers. They have been tested for reliability and validity. 3.8.1 Pilot Study and Pre-test: A pilot study was conducted by the researcher during the period of July 2010 August 2010. The main objective of this effort was to check the feasibility factors involved in conducting the main study and to gain more factual information to improve the overall research design and the method of study. The tools were pretested on 20 samples. No major changes were found necessary. 3.9.1 Data Analysis and Interpretation: The interview schedule was verified for the completeness of the data at the end of each interview and the collected data was coded and entered in the computer. The analysis of the data was carried out by using the Statistical Package for Social Sciences (SPSS) version 11.0. The data was edited, coded and verified to ensure the completeness of the data. Further it was validated and analyzed. 109
The analysis of the data was based on the specific objectives and hypothesis of the study. The researcher has used both descriptive and inferential statistical methods to analyze the data. Descriptive statistics are used to describe the basic features of the data in the study. The data has been described using simple frequency tables basic descriptive statistics like mean, Median, standard deviation where ever necessary they provide simple summaries about the sample and the measures. Together simple graphic/diagrammatic representations are used for the primary level of analysis of the data. They form the basis of quantitative analysis of data. With descriptive statistics the study simply describes what is and what the data shows. Being an explanatory study the research is interested to find out the relationship between variables. So the study has extensively used inferential statistics to assess the relationship between variables taken for the study which is carefully written in the form of hypothesis and taken for verification by using advance statistics. For continuous variable to ensure the relationship between dependent and independent variable correlation method was used. To establish the association between dependent and independent variable in the case of categorical variables non parametric test like x2 or z test was conducted. To find out difference among various group and classification of groups ANOVAs techniques was used. 3.10.1 Limitations of the Study: As the study investigates women living with HIV, the researcher had to follow the procedure and guidelines given according to Ethical guidelines for the Social Science Research prescribed by ICMR, Therefore a scientific sampling procedure was not possible. The study group is only women with HIV positive status; there is no comparative group to see the differences in quality of life, general health condition and social support from the gender perspective. 110
3.11.1 Organization of the study Report: The study report has been organized in the following format Chapter I Introduction, Research problem and significance Chapter II Review of Literature: It contains a detailed review of theoretical and empirical study on the variables selected for the study. Chapter III Methodology adopted for the study- Research Design., Selection of Respondents, type of study, method of data collection, type of data, tools and technique of data collection, analysis procedure. The chapter also describes the objective of the study, operational definitions and limitation of the study. Chapter IV Analysis and Interpretation of Data: - Interpretations of the study findings. Chapter V Discussion on study findings Chapter VI Suggestions and recommendations for future research and implications in social work practice. After having presented the Research Methodology in this chapter, the researcher will present the analysis of data in the following chapter. 111