Using caqdas to detect the needs and issues faced by families affected by hiv and aids


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Presented at the Asia-Pacific Conference on Computer-Aided Qualitative Research

24-25 February 2011, Macau SAR

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Merlien Institute

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Using caqdas to detect the needs and issues faced by families affected by hiv and aids

  1. 1. The stories behind children living in HIVand AIDS affected families:Using CAQDAS to detect the needs andissues faced by families affected by HIVand AIDS Dr. Ng Lee Luan COMPUTER-AIDED QUALITATIVE RESEARCH 2011 University of Macau 24 & 25 February 2011 1
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  3. 3. What is HIV (humanimmunodeficiency virus)? HIV simply means that you have tested positive for the virus. It does not become AIDS usually for ten years or until immune system problems appear. 4
  4. 4. What is AIDS (Acquired ImmuneDeficiency Syndrome)? is a way of describing a whole group of symptoms and diseases associated with the damage HIV does to the immune system. As an HIV infection progresses, there is ongoing damage to immune defense cells and the body becomes increasingly less able to fight off infection.
  5. 5. It is important toknow that aperson can livewith HIV formany yearswithoutdeveloping AIDSsymptoms. 6
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  7. 7. Vulnerability of Malaysian Children and Familiesto HIV and AIDS Between 1986(when the first case of HIV was reported in Malaysia) and the end of 2008, cumulative HIV cases reported stood at 84,630 of which 14,576 were AIDS cases. During this time, 12,589 people had died of AIDS. In Malaysia, about 32% of the total population is aged between of 0-14 years 9
  8. 8. Vulnerability of Malaysian Children andFamilies to HIV and AIDS In addition, in the period of 1986-2005 about 38% of the people living with the disease are found to have been between the ages of 0-29 years (The Malaysian Ministry of Health, 2006). These trends may to a greater future effect of the epidemic on children, including the children’s homes, family environment, living conditions and the children’s quality of life.
  9. 9. Background of project UNICEF Malaysia wanted more details related to how the livelihood of families with children are affected by HIV/AIDS. These details could not be gleaned from the research report conducted by a team of researchers who collected data using a questionnaire.
  10. 10. Objectives Findings from the project seek to: Gain current and up-to-date information and fill the gaps in available data on children infected with and affected by HIV and AIDS. support evidence-based policy formulation and programming for the medium and long- term future of Malaysian children affected by AIDS 12
  11. 11. Participants Snowball sampling approach The target group of the research project included: Families with children, at least one parent living with HIV or one of the parents has died due to AIDS. The caregivers of children (whose lives have been directly or indirectly affected by HIV/AIDS)
  12. 12. Method 7 sellected members, who belong to the Pink Triangle group (associated to the Malaysian AIDS council) were recruited as interviewers. These interviewers underwent training sessions related to interview and questioning techniques.
  13. 13. Data 25 digitally recorded interview sessions Length of interview ranges from 45minutes – 90 minutes Languages: 18 – Malay 4 – Chinese (Cantonese, Mandarin) 3 – Indian (Tamil)
  14. 14. Analysis Nvivo 8.0 Initial coding framework were established using the focus area pre- identified in an earlier research project of a quantitative nature. Coding framework were then refined based on findings subsequently uncovered in interview data.
  15. 15. Some Findings Issues linked to revelation Lack of AIDS related knowledge among patients The importance of outreach programs by NGOs
  16. 16. Issues linked to revelation Disguise as other more common sickness “My daughter does not know of my sickness. If she asked, I’ll just say I am suffering from migraine. That’s all.” “When my son was not feeling well, I would only let the school know that he suffered from weak stomach. Couldn’t tell them the truth.”
  17. 17. Issues linked to revelation Rejection by family members “ They (family members) have indeed abandoned us after they know about my sickness. My own siblings totally refused to have any contact with us.
  18. 18. Issues linked to revelation Fear of discrimination Not possible. Children cannot keep secrets. I am worried that he may tell the friends or teachers in school and they will discriminate him. (A HIV positive father) My child’s classmate’s father was sentenced to jail, he was boycotted by other students. What more if these classmates knew that my son is HIV positive.
  19. 19. Issues linked to revelation Fear of discrimination I once told a close friend of mine. As soon as she knew, she decided to end our friendship and kept her distance from me. (a A HIV positive mother)
  20. 20. Lack of AIDS related knowledgeamong patients/caregivers “We have to be careful, have to take care of our health. Like now, when there is H1N1 risk, cannot go to public places because we are the ones who have high-risk diseases.” (a mother who is HIV positive) This sickness is like leprosy. It spreads and has to be isolated. (A HIV positive parent)
  21. 21. Lack of AIDS related knowledgeamong patients/caregivers I have no idea, according to others, prostitudes are the ones who get AIDS. I don’t do those thing…I can’t understand how this sickness spread. (A wife whose husband died of AIDS)
  22. 22. The importance of NGOs andoutreach programs by NGOs Financial aid “I don’t know. I only meet a person from the group whose name is John. He has arranged for me to receive RM200 per month to pay for my child’s medication.”
  23. 23. The importance of NGOs andoutreach programs by NGOs Support for family members “At least they bother to find out about you, visit you and enable you to have new friends. At least my wife can meet up with others and see for herself that others who are sick, can also be successful in something.”
  24. 24. The importance ofNGOs and outreachprograms by NGOs Emotional Support “Because I am always stressed out about my sickness, I will contact Mr. Roslan from this group. I’ll tell him my feeling and he will try to motivate and give me hope to continue my life.” “I get all my spirit to continue living from the PT foundation and those friends that I got to know from the foundation.” “Part of that is the Tamil support group. The support group actually helps a lot. First thing is to overcome the fear in you. When I see other HIV people can live for another 10, 15 or even 20 years, it has given me strength to go on.”
  25. 25. Implication of includingCAQDAS in researchIn the context ofthe present study,the various linkingand trackingfunctions speedup the analysisprocess
  26. 26. Implication of including CAQDAS in researchThe “see-also” function found in Nvivo enabled the researchers to effectivelyand efficiently detect theme(s) derived from codes which subsume underdifferent branches of codes in the coding framework.
  27. 27. Implication of including CAQDAS in researchThe coding comparison function enables researchers tocheck inter-rater reliability
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  29. 29. Presented at the Asia-Pacific conference on Computer-Aided Qualitative Research 24 & 25 Feb 2011, Macau SARFor more information about our upcoming conferences Please visit: 31