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Sampling and accessing people with AIDS. Implications for program evaluation.

J A Fleishman1, V Mor, J S Cwi

  • 1Brown University Center for Gerontology and Health Care Research.

Evaluation & the Health Professions
|November 4, 1992
PubMed
Summary
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Conducting surveys with people with acquired immune deficiency syndrome (AIDS) is challenging due to confidentiality concerns and difficulties in accessing participants. Future studies should allocate funds for dedicated recruitment staff to improve respondent engagement.

Area of Science:

  • Public Health
  • Health Services Research
  • Social Work

Background:

  • Evaluating health and social services for individuals with acquired immune deficiency syndrome (AIDS) requires robust data collection methods.
  • Confidentiality concerns for people with human immunodeficiency virus (HIV) infection present significant challenges in research sampling.
  • Traditional recruitment through healthcare providers can lead to implementation issues and slow participant accrual.

Purpose of the Study:

  • To describe the challenges encountered in surveying individuals with AIDS within a service delivery program evaluation.
  • To identify barriers to random sampling and participant recruitment in this population.
  • To offer recommendations for improving future research methodologies.

Main Methods:

Related Experiment Videos

  • The study involved an attempted survey of program recipients with AIDS.
  • Data collection faced impediments related to confidentiality and reliance on health service provider mediation.
  • Sample characteristics were compared against a broader client database.

    • Main Results:

    • Confidentiality requirements for people with HIV significantly hindered random sampling and access to program recipients.
    • Recruitment via health service providers resulted in non-implementation and slow participant accrual.
    • The obtained sample overrepresented more accessible and compliant clients, though individuals with AIDS showed high willingness to be interviewed (refusal rates <11%).

    Conclusions:

    • Direct service providers' time constraints impede respondent recruitment for studies involving people with AIDS.
    • Future research should consider allocating funds for administrative staff to manage respondent recruitment.
    • Overcoming recruitment barriers is crucial for accurate program evaluation and understanding the needs of people with AIDS.