Skip to main content
Top
Published in: BMC Public Health 1/2014

Open Access 01-12-2014 | Research article

Informing the development of an online self-management program for men living with HIV: a needs assessment

Authors: Tanya Millard, Karalyn McDonald, Julian Elliott, Sean Slavin, Sally Rowell, Sonya Girdler

Published in: BMC Public Health | Issue 1/2014

Login to get access

Abstract

Background

The aim of this mixed methods study was to conduct a multifaceted needs assessment to inform the development of an online self-management program for men living with HIV. The objectives were to describe the health-related quality of life for men living with HIV, the impact of living with HIV, and the perceived problem areas and service and support needs of these men. The needs assessment was conducted in accordance with the PRECEDE model for health promotion program planning.

Methods

A survey assessing the quality of life of men living with HIV (n = 72) was conducted and results were compared to Australian normative data. Focus groups were also undertaken with men living with HIV (n = 11) and a multidisciplinary team of service providers working in the area of HIV (n = 11). Focus groups enabled an in-depth description of the impact of HIV on quality of life and perceived problem areas in daily life.

Results

HIV-positive men experience significantly lower quality of life when compared with Australian normative data, particularly in those domains concerned with social and emotional aspects of quality of life. Qualitative focus groups yielded an overarching theme ‘The psychosocial impact of HIV’ which contained three sub-themes; (1) Life before and after HIV – a changed identity and its repercussions; (2) Resilience and the importance of social support; (3) Negotiating the practicalities – intimate relationships and disclosure.

Conclusions

The findings from this needs assessment highlight the need to target socio-emotional contexts of HIV positive men’s daily lives to improve quality of life and well-being. Intervention priorities for the proposed online self-management program include: (1) managing the emotional impact of HIV; (2) disclosing HIV status to family and friends; (3) maintaining social connectedness; (4) managing HIV within intimate relationships; and (5) disclosure of HIV status to intimate partners.
Literature
1.
go back to reference Jansson J, Wilson DP: Projected demographic profile of people living with HIV in Australia: planning for an older generation. PloS One. 2012, 7 (8): e38334-10.1371/journal.pone.0038334.CrossRefPubMedPubMedCentral Jansson J, Wilson DP: Projected demographic profile of people living with HIV in Australia: planning for an older generation. PloS One. 2012, 7 (8): e38334-10.1371/journal.pone.0038334.CrossRefPubMedPubMedCentral
2.
go back to reference Gifford AL, Sengupta S: Self-management health education for chronic HIV infection. AIDS Care. 1999, 11 (1): 115-130. 10.1080/09540129948243.CrossRefPubMed Gifford AL, Sengupta S: Self-management health education for chronic HIV infection. AIDS Care. 1999, 11 (1): 115-130. 10.1080/09540129948243.CrossRefPubMed
3.
go back to reference Smith SR, Rublein JC, Marcus C, Brock TP, Chesney MA: A medication self-management program to improve adherence to HIV therapy regimens. Patient Educ Couns. 2003, 50: 187-199. 10.1016/S0738-3991(02)00127-1.CrossRefPubMed Smith SR, Rublein JC, Marcus C, Brock TP, Chesney MA: A medication self-management program to improve adherence to HIV therapy regimens. Patient Educ Couns. 2003, 50: 187-199. 10.1016/S0738-3991(02)00127-1.CrossRefPubMed
4.
go back to reference Millard T, Elliott J, Girdler S: Self management education programs for people living with HIV/AIDS: a systematic review. AIDS Patient Care STDS. 2013, 27 (2): 103-113. 10.1089/apc.2012.0294.CrossRefPubMed Millard T, Elliott J, Girdler S: Self management education programs for people living with HIV/AIDS: a systematic review. AIDS Patient Care STDS. 2013, 27 (2): 103-113. 10.1089/apc.2012.0294.CrossRefPubMed
5.
go back to reference Lorig KR, Holman HR: Self-management education: history, definition, outcomes and mechanisms. Ann Behav Med. 2003, 26 (1): 1-7.CrossRefPubMed Lorig KR, Holman HR: Self-management education: history, definition, outcomes and mechanisms. Ann Behav Med. 2003, 26 (1): 1-7.CrossRefPubMed
6.
go back to reference Shively M, Smith TL, Bormann J, Gifford AL: Evaluating self-efficacy for HIV disease management skills. AIDS Behav. 2002, 6 (4): 371-379. 10.1023/A:1021156914683.CrossRef Shively M, Smith TL, Bormann J, Gifford AL: Evaluating self-efficacy for HIV disease management skills. AIDS Behav. 2002, 6 (4): 371-379. 10.1023/A:1021156914683.CrossRef
7.
go back to reference Norris SL, Engelgua MM, Venkat Narayan KM: Effectivness of self-management training in type 2 diabetes. Diabetes Care. 2001, 24 (3): 561-587. 10.2337/diacare.24.3.561.CrossRefPubMed Norris SL, Engelgua MM, Venkat Narayan KM: Effectivness of self-management training in type 2 diabetes. Diabetes Care. 2001, 24 (3): 561-587. 10.2337/diacare.24.3.561.CrossRefPubMed
8.
go back to reference Lorig KR, Ritter PL, Laurent DD, Plant K: The internet-based arthritis self-management program: a one-year randomized trial for patients with arthritis or fibromyalgia. Arthritis Care Res. 2008, 59 (7): 1009-1017. 10.1002/art.23817.CrossRef Lorig KR, Ritter PL, Laurent DD, Plant K: The internet-based arthritis self-management program: a one-year randomized trial for patients with arthritis or fibromyalgia. Arthritis Care Res. 2008, 59 (7): 1009-1017. 10.1002/art.23817.CrossRef
9.
go back to reference Girdler SJ, Boldy DP, Dhaliwal SS, Crowley M, Packer TL: Vision self-management for older adults: a randomised controlled trial. Br J Ophthalmol. 2010, 94: 223-228. 10.1136/bjo.2008.147538.CrossRefPubMed Girdler SJ, Boldy DP, Dhaliwal SS, Crowley M, Packer TL: Vision self-management for older adults: a randomised controlled trial. Br J Ophthalmol. 2010, 94: 223-228. 10.1136/bjo.2008.147538.CrossRefPubMed
10.
go back to reference Lorig KR, Ritter P, Stewart AL, Sobel DS, William Brown B, Bandura A, Gonzales VM, Laurent DD, Holman HR: Chronic disease self-management program: 2-year health status and health care utilization outcomes. Med Care. 2001, 39 (11): 1217-1233. 10.1097/00005650-200111000-00008.CrossRefPubMed Lorig KR, Ritter P, Stewart AL, Sobel DS, William Brown B, Bandura A, Gonzales VM, Laurent DD, Holman HR: Chronic disease self-management program: 2-year health status and health care utilization outcomes. Med Care. 2001, 39 (11): 1217-1233. 10.1097/00005650-200111000-00008.CrossRefPubMed
11.
go back to reference Borubeau J, Julien M, Maltais F, Rouleau M, Beaupre A, Begin R, Renzi P, Nault D, Borycki E, Schwartzman K, Singh R, Collet J: Reduction of hospital utilization in patients with chronic obstructive pulmonary disease. Arch Int Med. 2003, 163: 585-591. 10.1001/archinte.163.5.585.CrossRef Borubeau J, Julien M, Maltais F, Rouleau M, Beaupre A, Begin R, Renzi P, Nault D, Borycki E, Schwartzman K, Singh R, Collet J: Reduction of hospital utilization in patients with chronic obstructive pulmonary disease. Arch Int Med. 2003, 163: 585-591. 10.1001/archinte.163.5.585.CrossRef
12.
go back to reference Rueda S, Park-Wyllie LY, Bayoumi A, Tynan AM, Antoniou T, Rourke S, Glazier R: Patient support and education for promoting adherence to highly active antiretroviral therapy for HIV/AIDS. Cochrane Database Syst Rev. 2006, 3 (3): CD001442-PubMed Rueda S, Park-Wyllie LY, Bayoumi A, Tynan AM, Antoniou T, Rourke S, Glazier R: Patient support and education for promoting adherence to highly active antiretroviral therapy for HIV/AIDS. Cochrane Database Syst Rev. 2006, 3 (3): CD001442-PubMed
13.
go back to reference O’Brien K, Nixon S, Glazier R, Tynan AM: Progressive resistive exercise interventions for adults living with HIV/AIDS. Cochrane Database Syst Rev. 2004, 4 (8): CD004248-PubMed O’Brien K, Nixon S, Glazier R, Tynan AM: Progressive resistive exercise interventions for adults living with HIV/AIDS. Cochrane Database Syst Rev. 2004, 4 (8): CD004248-PubMed
14.
go back to reference O’Brien K, Nixon S, Tynan AM, Glazier R: Aerobic exercise interventions for adults living with HIV/AIDS. Cochrane Database Syst Rev. 2010, 8 (8): CD001796-PubMed O’Brien K, Nixon S, Tynan AM, Glazier R: Aerobic exercise interventions for adults living with HIV/AIDS. Cochrane Database Syst Rev. 2010, 8 (8): CD001796-PubMed
15.
go back to reference Swendeman D, Ingram BL, Rotheram-Borus M: Common elements in self-management of HIV and other chronic illnesses: an integrative framework. AIDS Care. 2009, 21 (10): 1321-1334. 10.1080/09540120902803158.CrossRefPubMedPubMedCentral Swendeman D, Ingram BL, Rotheram-Borus M: Common elements in self-management of HIV and other chronic illnesses: an integrative framework. AIDS Care. 2009, 21 (10): 1321-1334. 10.1080/09540120902803158.CrossRefPubMedPubMedCentral
16.
go back to reference Jones SC, Donovan RJ: Does theory inform practice in health promotion in Australia?. Health Educ Rep. 2004, 19 (1): 1-14. 10.1093/her/cyg002.CrossRef Jones SC, Donovan RJ: Does theory inform practice in health promotion in Australia?. Health Educ Rep. 2004, 19 (1): 1-14. 10.1093/her/cyg002.CrossRef
17.
go back to reference Green L, Kreuter M: The PRECEDE–PROCEED model. Health Promotion Planning: An Educational Approach. 1999, Mountain View (CA): Mayfield Publishing Company, 32-43. 3 Green L, Kreuter M: The PRECEDE–PROCEED model. Health Promotion Planning: An Educational Approach. 1999, Mountain View (CA): Mayfield Publishing Company, 32-43. 3
18.
go back to reference Gilmore GD, Campbell MD: Needs and Capacity Assessment Strategies for Health Education and Health Promotion. 2005, Sudbury, MA: Jones and Bartlett, 3 Gilmore GD, Campbell MD: Needs and Capacity Assessment Strategies for Health Education and Health Promotion. 2005, Sudbury, MA: Jones and Bartlett, 3
19.
go back to reference Gupta K, Sleezer CM, Russ-Eft DF: A Practical Guide to Needs Assessment. 2007, San Francisco, CA: Pfeiffer, 2 Gupta K, Sleezer CM, Russ-Eft DF: A Practical Guide to Needs Assessment. 2007, San Francisco, CA: Pfeiffer, 2
20.
go back to reference Bartholomew LK, Parcel GS, Kok G, Gottlieb NH, Fernandez ME: Planning Health Promotion Programs: An Intervention Mapping Approach. 2011, San Fracisco, CA: Jossey-Bass Bartholomew LK, Parcel GS, Kok G, Gottlieb NH, Fernandez ME: Planning Health Promotion Programs: An Intervention Mapping Approach. 2011, San Fracisco, CA: Jossey-Bass
21.
go back to reference Gielen AC, McDonald EM, Gary TL, Bone LR: Health Behavior and Health Education: Theory, Research, and Practice. Using the PRECEDE-PROCEED Model to Apply Health Behavior Theories. 2008, 407-433. Gielen AC, McDonald EM, Gary TL, Bone LR: Health Behavior and Health Education: Theory, Research, and Practice. Using the PRECEDE-PROCEED Model to Apply Health Behavior Theories. 2008, 407-433.
22.
go back to reference Ware JE, Maruish ME: SF-36 Health Survey. The use of Psychological Testing for Treatment Planning and Outcomes Assessment. 1999, Mahwah, NJ US: Lawrence Erlbaum Associates Publishers, 1227-1246. 2 Ware JE, Maruish ME: SF-36 Health Survey. The use of Psychological Testing for Treatment Planning and Outcomes Assessment. 1999, Mahwah, NJ US: Lawrence Erlbaum Associates Publishers, 1227-1246. 2
23.
go back to reference Delate T, Coons SJ: The discriminative ability of the 12-item short form health survey (SF-12) in a sample of persons infected with HIV. Clin Ther. 2000, 22 (9): 1112-1120. 10.1016/S0149-2918(00)80088-0.CrossRefPubMed Delate T, Coons SJ: The discriminative ability of the 12-item short form health survey (SF-12) in a sample of persons infected with HIV. Clin Ther. 2000, 22 (9): 1112-1120. 10.1016/S0149-2918(00)80088-0.CrossRefPubMed
24.
go back to reference Lincoln YS, Guba EG: Naturalistic Inquiry. 1985, Beverly Hills, CA: SAGE Publications, Incorporated, 75 Lincoln YS, Guba EG: Naturalistic Inquiry. 1985, Beverly Hills, CA: SAGE Publications, Incorporated, 75
25.
go back to reference Statistics ABo: National Health Survey: SF-36 Population Norms Australia (No. 43990.0). 1995, Canberra: Australian Capital Territory Statistics ABo: National Health Survey: SF-36 Population Norms Australia (No. 43990.0). 1995, Canberra: Australian Capital Territory
26.
go back to reference Braun V, Clarke V: Using thematic analysis in psychology. Qual Res Psychol. 2006, 3 (2): 77-101. 10.1191/1478088706qp063oa.CrossRef Braun V, Clarke V: Using thematic analysis in psychology. Qual Res Psychol. 2006, 3 (2): 77-101. 10.1191/1478088706qp063oa.CrossRef
27.
go back to reference Emlet CA: A comparison of HIV stigma and disclosure patterns between older and younger adults living with HIV/AIDS. AIDS Patient Care STDS. 2006, 20: 350-358. 10.1089/apc.2006.20.350.CrossRefPubMed Emlet CA: A comparison of HIV stigma and disclosure patterns between older and younger adults living with HIV/AIDS. AIDS Patient Care STDS. 2006, 20: 350-358. 10.1089/apc.2006.20.350.CrossRefPubMed
28.
go back to reference Mahajan AP, Sayles JN, Patel VA, Remien RH, Ortiz D, Szekeres G, Coates TJ: Stigma in the HIV/AIDS epidemic: a review of the literature and recommendations for the way forward. AIDS (London, England). 2008, 22 (Suppl 2): S67-10.1097/01.aids.0000327439.20914.33.CrossRef Mahajan AP, Sayles JN, Patel VA, Remien RH, Ortiz D, Szekeres G, Coates TJ: Stigma in the HIV/AIDS epidemic: a review of the literature and recommendations for the way forward. AIDS (London, England). 2008, 22 (Suppl 2): S67-10.1097/01.aids.0000327439.20914.33.CrossRef
29.
go back to reference Webel AR, Longenecker CT, Gripshover B, Hanson JE, Schmotzer BJ, Salata RA: Age, stress, and isolation in older adults living with HIV. AIDS Care. 2014, 26 (5): 523-531. 10.1080/09540121.2013.845288.CrossRefPubMed Webel AR, Longenecker CT, Gripshover B, Hanson JE, Schmotzer BJ, Salata RA: Age, stress, and isolation in older adults living with HIV. AIDS Care. 2014, 26 (5): 523-531. 10.1080/09540121.2013.845288.CrossRefPubMed
30.
go back to reference Mayfield-Arnold EM, Rice E, Flannery D, Rotheram-Borus MJ: HIV disclosure among adults living with HIV. AIDS Care. 2008, 20: 80-92. 10.1080/09540120701449138.CrossRefPubMed Mayfield-Arnold EM, Rice E, Flannery D, Rotheram-Borus MJ: HIV disclosure among adults living with HIV. AIDS Care. 2008, 20: 80-92. 10.1080/09540120701449138.CrossRefPubMed
31.
go back to reference Smith R, Rosetto K, Peterson BL: A meat-analysis of disclosure of one’s HIV-positive status, stigma and social support. AIDS Care. 2008, 20: 1266-1275. 10.1080/09540120801926977.CrossRefPubMed Smith R, Rosetto K, Peterson BL: A meat-analysis of disclosure of one’s HIV-positive status, stigma and social support. AIDS Care. 2008, 20: 1266-1275. 10.1080/09540120801926977.CrossRefPubMed
32.
go back to reference Kalichman SC, DiMarco M, Austin J, Luke W, DiFonzo K: Stress, social support, and HIV-status disclosure to family and friends among HIV-positive men and women. J Behav Med. 2003, 26 (4): 315-332. 10.1023/A:1024252926930.CrossRefPubMed Kalichman SC, DiMarco M, Austin J, Luke W, DiFonzo K: Stress, social support, and HIV-status disclosure to family and friends among HIV-positive men and women. J Behav Med. 2003, 26 (4): 315-332. 10.1023/A:1024252926930.CrossRefPubMed
33.
go back to reference Rutledge SE: Single-session motivational enhancement counseling to support change toward reduction of HIV transmission by HIV positive persons. Arch Sex Behav. 2007, 36 (2): 313-319. 10.1007/s10508-006-9077-8.CrossRefPubMed Rutledge SE: Single-session motivational enhancement counseling to support change toward reduction of HIV transmission by HIV positive persons. Arch Sex Behav. 2007, 36 (2): 313-319. 10.1007/s10508-006-9077-8.CrossRefPubMed
34.
go back to reference Grierson J, Power J, Pitts M, Croy S, Clement T, Thorpe R, McDonald K: HIV Futures 6: Making Positive Lives Count. 2009, Melbourne, Australia: Latrobe University Grierson J, Power J, Pitts M, Croy S, Clement T, Thorpe R, McDonald K: HIV Futures 6: Making Positive Lives Count. 2009, Melbourne, Australia: Latrobe University
35.
go back to reference Brashers DE, Neidig JL, Russel JA, Cardillo JA, Haas SM, Dobbs LK, Garland M, McCartney B, Nemeth S: The medical, personal, and social causes of uncertainty in HIV illness. Issues Ment Health Nurs. 2003, 24: 497-522. 10.1080/01612840305292.CrossRefPubMed Brashers DE, Neidig JL, Russel JA, Cardillo JA, Haas SM, Dobbs LK, Garland M, McCartney B, Nemeth S: The medical, personal, and social causes of uncertainty in HIV illness. Issues Ment Health Nurs. 2003, 24: 497-522. 10.1080/01612840305292.CrossRefPubMed
36.
go back to reference Crepaz N, Marks G: Serostatus disclosure, sexual communication and safer sex in HIV-positive men. AIDS Care. 2003, 15: 379-387. 10.1080/0954012031000105432.CrossRefPubMed Crepaz N, Marks G: Serostatus disclosure, sexual communication and safer sex in HIV-positive men. AIDS Care. 2003, 15: 379-387. 10.1080/0954012031000105432.CrossRefPubMed
Metadata
Title
Informing the development of an online self-management program for men living with HIV: a needs assessment
Authors
Tanya Millard
Karalyn McDonald
Julian Elliott
Sean Slavin
Sally Rowell
Sonya Girdler
Publication date
01-12-2014
Publisher
BioMed Central
Published in
BMC Public Health / Issue 1/2014
Electronic ISSN: 1471-2458
DOI
https://doi.org/10.1186/1471-2458-14-1209

Other articles of this Issue 1/2014

BMC Public Health 1/2014 Go to the issue