Skip to main content

Scoping the Field: Identifying Key Research Priorities in HIV and Rehabilitation

Abstract

The purpose of this project was to identify key research priorities related to HIV and rehabilitation. We conducted a scoping study which included a literature review of published and grey literature, followed by focus group and interview consultations with 28 participants including people living with HIV, researchers, educators, clinicians, and policy makers with expertise in HIV and rehabilitation. Qualitative content analysis was used to identify emergent themes related to research priorities in HIV and rehabilitation. The resulting Framework of HIV and Rehabilitation Research provided an outline for approaching research in the field. The framework included three overlapping research priorities: (a) living with HIV across the lifespan, (b) disability, and (c) rehabilitation that should be viewed through environmental and/or personal contextual lenses, using different methodological approaches. Six key research priorities from this framework were identified through additional consultation with new and returning participants including: (1) disability and episodic disability, (2) concurrent health conditions aging with HIV, (3) HIV and the brain, (4) labour force and income support, (5) access to and effectiveness of rehabilitation, and (6) development and evaluation of outcome measurement tools. These priorities inform a future plan for HIV and rehabilitation research that will increase our knowledge to enhance practice, programming and policy for people living with HIV.

This is a preview of subscription content, access via your institution.

Fig. 1
Fig. 2
Fig. 3

References

  1. Arksey, H., & O’Malley, L. (2005). Scoping studies: Towards a methodological framework. International Journal of Social Research Methodology, 8(1), 19–32. doi:10.1080/1364557032000119616.

    Article  Google Scholar 

  2. Atchison, B. J., Beard, B. J., & Lester, L. B. (1990). Occupational therapy personnel and AIDS: Attitudes, knowledge, and fears. The American Journal of Occupational Therapy., 44(3), 212–217.

    CAS  PubMed  Google Scholar 

  3. Balogun, J. A., Kaplan, M. T., & Miller, T. M. (1998). The effect of professional education on the knowledge and attitudes of physical therapist and occupational therapist students about acquired immunodeficiency syndrome. Physical Therapy, 78(10), 1073–1082.

    CAS  PubMed  Google Scholar 

  4. Birk, T. J., McGrady, A., MacArthur, R. D., & Khuder, S. (2000). The effects of massage therapy alone and in combination with other complementary therapies on immune system measures and quality of life in human immunodeficiency virus. Journal of Alternative and Complementary Medicine (New York), 6(5), 405–414. doi:10.1089/acm.2000.6.405.

    Article  CAS  Google Scholar 

  5. Braveman, B., Levin, M., Kielhofner, G., & Finlayson, M. (2006). HIV/AIDS and return to work: A literature review one-decade post-introduction of combination therapy (HAART). Work (Reading, Mass.), 27(3), 295–303.

    Google Scholar 

  6. Canadian Working Group on HIV and Rehabilitation. (2008). Retrieved 13 April 2008, from www.hivandrehab.ca.

  7. Chan, I., Kong, P., Leung, P., Au, A., Li, P., Chung, R., et al. (2005). Cognitive-behavioral group program for Chinese heterosexual HIV-infected men in Hong Kong. Patient Education and Counseling, 56(1), 78–84. doi:10.1016/j.pec.2003.12.010.

    Article  PubMed  Google Scholar 

  8. Cleary, P. D., Fowler, F. J., Jr, Weissman, J., Massagli, M. P., Wilson, I., Seage, G. R., I. I. I., et al. (1993). Health-related quality of life in persons with acquired immune deficiency syndrome. Medical Care, 31(7), 569–580. doi:10.1097/00005650-199307000-00001.

    Article  CAS  PubMed  Google Scholar 

  9. Crepaz, N., Passin, W. F., Herbst, J. H., Rama, S. M., Malow, R. M., Purcell, D. W., et al. (2008). Meta-analysis of cognitive-behavioral interventions on HIV-positive persons’ mental health and immune functioning. Health Psychology, 27(1), 4–14. doi:10.1037/0278-6133.27.1.4.

    Article  PubMed  Google Scholar 

  10. Crystal, S., Fleishman, J. A., Hays, R. D., Shapiro, M. F., & Bozzette, S. A. (2000). Physical and role functioning among persons with HIV: Results from a nationally representative survey. Medical Care, 38(12), 1210–1223. doi:10.1097/00005650-200012000-00008.

    Article  CAS  PubMed  Google Scholar 

  11. Crystal, S., & Sambamoorthi, U. (1996). Functional impairment trajectories among persons with HIV disease: A hierarchical linear models approach. Health Services Research, 31(4), 469–488.

    CAS  PubMed  Google Scholar 

  12. Eller, L. S., Corless, I., Bunch, E. H., Kemppainen, J., Holzemer, W., Nokes, K., et al. (2005). Self-care strategies for depressive symptoms in people with HIV disease. Journal of Advanced Nursing, 51(2), 119–130. doi:10.1111/j.1365-2648.2005.03474.x.

    Article  PubMed  Google Scholar 

  13. Emlet, C. A. (2006). “You’re awfully old to have this disease”: Experiences of stigma and ageism in adults 50 years and older living with HIV/AIDS. The Gerontologist, 46(6), 781–790.

    PubMed  Google Scholar 

  14. Ferrier, S. E., & Lavis, J. N. (2003). With health comes work? People living with HIV/AIDS consider returning to work. AIDS Care, 15(3), 423–435. doi:10.1080/0954012031000105478.

    Article  CAS  PubMed  Google Scholar 

  15. Fleishman, J. A., Hsia, D. C., & Hellinger, F. J. (1994). Correlates of medical service utilization among people with HIV infection. Health Services Research, 29(5), 527–548. see comment.

    CAS  PubMed  Google Scholar 

  16. Gross, J. (2008). AIDS patients face downside of living longer. New York Times. Retrieved 10 June 2008, from http://www.nytimes.com/2008/01/06/health/06HIV.html.

  17. Karpiak, S. E., Shippy, R. A., & Cantor, M. H. (2006). Research on older adults with HIV. New York: AIDS Community Research Initiative of America.

    Google Scholar 

  18. Kielhofner, G., Braveman, B., Finlayson, M., Paul-Ward, A., Goldbaum, L., & Goldstein, K. (2004). Outcomes of a vocational program for persons with AIDS. The American Journal of Occupational Therapy, 58(1), 64–72.

    PubMed  Google Scholar 

  19. Levinson, S. F., & O’Connell, P. G. (1991). Rehabilitation dimensions of AIDS: A review. Archives of Physical Medicine and Rehabilitation, 72(9), 690–696.

    CAS  PubMed  Google Scholar 

  20. Mills, E., Wu, P., & Ernst, E. (2005). Complementary therapies for the treatment of HIV: In search of the evidence. International Journal of STD & AIDS, 16(6), 395–403. doi:10.1258/0956462054093962.

    Article  Google Scholar 

  21. Nixon, S., & Renwick, R. (2003). Experiences of contemplating returning to work for people living with HIV/AIDS. Qualitative Health Research, 13(9), 1272–1290. doi:10.1177/1049732303257190.

    Article  PubMed  Google Scholar 

  22. O’Brien, K., Bayoumi, A. M., Strike, C., Young, N. L., & Davis, A. M. (2008a). Exploring disability from the perspective of adults living with HIV/AIDS: Development of a conceptual framework. Health and Quality of Life Outcomes, 6, 76. doi:10.1186/1477-7525-6-76.

    Article  PubMed  Google Scholar 

  23. O’Brien, K., Bayoumi, A. M., Strike, C., Young, N. L., King, K., & Davis, A. M. (2007). How Do Existing HIV-Specific Instruments Measure Up? Evaluating the Ability of Instruments to Describe “Disability” Experienced by Adults Living with HIV. Canadian Journal of Infectious Diseases & Medical Microbiology 16th Annual Canadian Conference on HIV/AIDS Research (CAHR). March/April 2007, Volume 18, Supplement SB (Abstract #O077).

  24. O’Brien, K., Bone, G., Zack, E., & Solomon, P. (2008b). HIV and Rehabilitation: Development of a conceptual framework for curriculum planning. International Journal of Rehabilitation Research. Internationale Zeitschrift fur Rehabilitationsforschung. Revue Internationale de Recherches de Readaptation, 31(3), 189–197.

    PubMed  Google Scholar 

  25. O’Brien, K., Nixon, S., Glazier, R. H., & Tynan, A. M. (2004). Progressive resistive exercise interventions for adults living with HIV/AIDS. Cochrane Database of Systematic Reviews (Online : Update Software), (4), CD004248.

  26. O’Brien, K., Nixon, S., Tynan, A. M., & Glazier, R. H. (2006). Aerobic exercise interventions for people living with HIV/AIDS: Implications for practice, education, and research. Physiotherapy Canada, 58(2), 114–129. doi:10.3138/ptc.58.2.114.

    Article  Google Scholar 

  27. O’Brien, K., Wilkins, A., Zack, E., Solomon, P., & Chegwidden, W. (2008c). Informing future research and best practices in HIV and rehabilitation: Research priorities and guiding principles for the development of best practice guidelines. Paper presented at the XVII International Conference on HIV/AIDS, Mexico City.

  28. O’Connell, P. G., & Levinson, S. F. (1991). Experience with rehabilitation in the acquired immunodeficiency syndrome. American Journal of Physical Medicine & Rehabilitation, 70(4), 195–200. doi:10.1097/00002060-199108000-00007.

    Article  Google Scholar 

  29. O’Dell, M. W. (1993). Rehabilitation medicine consultation in persons hospitalized with AIDS: An analysis of thirty cases. American Journal of Physical Medicine & Rehabilitation, 72(2), 90–96. doi:10.1097/00002060-199304000-00006.

    Article  Google Scholar 

  30. O’Dell, M. W. (1996). HIV-related neurological disability and prospects for rehabilitation. Disability and Rehabilitation, 18(6), 285–292.

    Article  PubMed  Google Scholar 

  31. Palella, F. J., Jr., Delaney, K. M., Moorman, A. C., Loveless, M. O., Fuhrer, J., Satten, G. A., et al. (1998). Declining morbidity and mortality among patients with advanced human immunodeficiency virus infection: HIV outpatient study investigators. The New England Journal of Medicine, 338(13), 853–860. doi:10.1056/NEJM199803263381301.

    Article  PubMed  Google Scholar 

  32. Piette, J. D., Fleishman, J. A., Stein, M. D., Mor, V., & Mayer, K. (1993). Perceived needs and unmet needs for formal services among people with HIV disease. Journal of Community Health, 18(1), 11–23. doi:10.1007/BF01321517.

    Article  CAS  PubMed  Google Scholar 

  33. Public Health Agency of Canada. (2007a). HIV and AIDS in Canada. Selected Surveillance Tables to 30 June 2007: Surveillance and Risk Assessment Division, Centre for Infectious Disease Prevention and Control, Public Health Agency of Canada.

  34. Public Health Agency of Canada. (2007b). HIV/AIDS Epi Updates, November 2007: Surveillance and Risk Assessment Division, Centre for Infectious Disease Prevention and Control, Public Health Agency of Canada.

  35. Robinson, F. P. (2004). HIV lipodystrophy syndrome: A primer. The Journal of the Association of Nurses in AIDS Care, 15(1), 15–29. doi:10.1177/1055329003255117.

    Article  PubMed  Google Scholar 

  36. Rusch, M., Nixon, S., Schilder, A., Braitstein, P., Chan, K., & Hogg, R. S. (2004a). Impairments, activity limitations and participation restrictions: Prevalence and associations among persons living with HIV/AIDS in British Columbia. Health and Quality of Life Outcomes, 2, 46. doi:10.1186/1477-7525-2-46.

    Article  PubMed  Google Scholar 

  37. Rusch, M., Nixon, S., Schilder, A., Braitstein, P., Chan, K., & Hogg, R. S. (2004b). Prevalence of activity limitation among persons living with HIV/AIDS in British Columbia. Canadian Journal of Public Health, 95(6), 437–440.

    Google Scholar 

  38. Scott-Sheldon, L. A., Kalichman, S. C., Carey, M. P., & Fielder, R. L. (2008). Stress management interventions for HIV+adults: A meta-analysis of randomized controlled trials, 1989 to 2006. Health Psychology, 27(2), 129–139. doi:10.1037/0278-6133.27.2.129.

    Article  PubMed  Google Scholar 

  39. Shor-Posner, G., Hernandez-Reif, M., Miguez, M.-J., Fletcher, M., Quintero, N., Baez, J., et al. (2006). Impact of a massage therapy clinical trial on immune status in young Dominican children infected with HIV-1. Journal of Alternative and Complementary Medicine (New York), 12(6), 511–516. doi:10.1089/acm.2006.12.511.

    Article  Google Scholar 

  40. Shor-Posner, G., Miguez, M.-J., Hernandez-Reif, M., Perez-Then, E., & Fletcher, M. (2004). Massage treatment in HIV-1 infected Dominican children: A preliminary report on the efficacy of massage therapy to preserve the immune system in children without antiretroviral medication. Journal of Alternative and Complementary Medicine (New York), 10(6), 1093–1095. doi:10.1089/acm.2004.10.1093. see comment.

    Article  Google Scholar 

  41. Strauss, A., & Corbin, J. (1998). Basics of qualitative research: Techniques and procedures for developing grounded theory (Vol. 2). Thousand Oaks, CA: Sage Publications.

    Google Scholar 

  42. Tsasis, P. (2000). Health-related quality-of-life measurements in HIV/AIDS care. AIDS Patient Care and STDs, 14(8), 427–438. doi:10.1089/108729100416641.

    Article  CAS  PubMed  Google Scholar 

  43. Valcour, V. G., Shikuma, C. M., Watters, M. R., & Sacktor, N. C. (2004). Cognitive impairment in older HIV-1-seropositive individuals: prevalence and potential mechanisms. AIDS (London, England), 18(Suppl. 1), S79–S86. doi:10.1097/00002030-200401001-00012.

    Google Scholar 

  44. Vincent, T. A., & Schkade, J. K. (1990). Knowledge and attitudes of occupational therapy students regarding AIDS. The American Journal of Occupational Therapy, 44(3), 205–210.

    CAS  PubMed  Google Scholar 

  45. Watters, M. R., Poff, P. W., Shiramizu, B. T., Holck, P. S., Fast, K. M., Shikuma, C. M., et al. (2004). Symptomatic distal sensory polyneuropathy in HIV after age 50. Neurology, 62(8), 1378–1383.

    CAS  PubMed  Google Scholar 

  46. Wilson, I. B., & Cleary, P. D. (1996). Clinical predictors of functioning in persons with acquired immunodeficiency syndrome. Medical Care, 34(6), 610–623. doi:10.1097/00005650-199606000-00010.

    Article  CAS  PubMed  Google Scholar 

  47. World Health Organization. (2001). International classification of functioning, disability and health (ICF). Geneva: The World Health Organization.

    Google Scholar 

  48. Worthington, C., Myers, T., O’Brien, K., Cockerill, R., Nixon, S., & Bereket, T. (2006). HIV health professional referrals to community services and views of service challenges in a nationally-funded health-care system. XVI International Conference on HIV/AIDS. eJournal of the International AIDS Society.

  49. Worthington, C., Myers, T., O’Brien, K., Nixon, S., & Cockerill, R. (2005). Rehabilitation in HIV/AIDS: Development of an expanded conceptual framework. AIDS Patient Care and STDs, 19(4), 258–271. doi:10.1089/apc.2005.19.258.

    Article  PubMed  Google Scholar 

  50. Worthington, C., Myers, T., O’Brien, K., Nixon, S., Cockerill, R., & Bereket, T. (2008). Rehabilitation professionals and human immunodeficiency virus care: Results of a national Canadian survey. Archives of Physical Medicine and Rehabilitation, 89(1), 105–113. doi:10.1016/j.apmr.2007.10.009.

    Article  PubMed  Google Scholar 

Download references

Acknowledgments

We gratefully acknowledge Elizabeth Uleryk, Director of the Hospital for Sick Children Library for her assistance with the search strategy. Funding for this research was provided by the Public Health Agency of Canada and the Canadian Institutes of Health Research. Kelly O’Brien is supported by a Fellowship from the Canadian Institutes of Health Research, HIV/AIDS Research Program.

Author information

Affiliations

Authors

Corresponding author

Correspondence to Kelly O’Brien.

Rights and permissions

Reprints and Permissions

About this article

Cite this article

O’Brien, K., Wilkins, A., Zack, E. et al. Scoping the Field: Identifying Key Research Priorities in HIV and Rehabilitation. AIDS Behav 14, 448–458 (2010). https://doi.org/10.1007/s10461-009-9528-z

Download citation

Keywords

  • HIV
  • Rehabilitation
  • Scoping study
  • Research
  • Disability