‘Waiting at the dinner table for scraps’: a qualitative study of the help-seeking experiences of heterosexual men living with HIV infection

Abstract

Objectives

To characterise the help-seeking experiences of heterosexual men living with HIV infection and explain these experiences in relation to the broader social relations and discourses in which they are embedded.

Design

Qualitative study using focus groups and theoretically informed constructionist grounded theory.

Setting

With one exception, focus groups were conducted in the offices of community-based AIDS service organisations across Ontario, Canada.

Participants

40 HIV-infected heterosexual men aged 18 years or older.

Results

Heterosexual men living with HIV perceive themselves to be relegated to the margins of a health care and service field that was developed historically within a context that privileges the priorities of gay men and heterosexual women living with the virus. Specifically, gay men are better positioned than heterosexual men when vying for the services and recognition of AIDS service organisations due to their social capital within these agencies, thereby benefiting by virtue of their membership with the group perceived to control the decision-making apparatuses when resource allocation and programme development are at stake. Relative to women, heterosexual men are poorly positioned due to their negative symbolic capital, derived from being perceived as the ‘guilty’ parties in the context of heterosexual HIV transmission. As a result, the material and support needs of women have been prioritised, while those of heterosexual men living with HIV remain largely unaddressed.

Conclusions

Heterosexual men living with HIV are operating within a health and service field that has not kept pace with their increased representation among the population of persons living with the virus. Researchers, clinicians and policy makers should strive to integrate heterosexual men living with HIV in decision making and community-based research initiatives that build capacity among this group while simultaneously generating a research and policy agenda specific to the concerns of this growing demographic.

Article summary

Article focus

• The prevalence of HIV infection among heterosexual men in North America and Western Europe is increasing.

• Very little empirical research exists examining the help-seeking experiences of heterosexual men living with HIV.

Key messages

• Heterosexual men living with HIV are navigating a healthcare and service field that has not kept pace with their increased representation among the population of persons living with the virus.

• Lacking in the symbolic appeal of heterosexual women living with HIV and the social connections of gay men, heterosexual men living with HIV have neither the requisite composition nor the volume of capital required to benefit fully from or improve their positions within the existing HIV-related health and service field.

• In keeping with the principle of Greater Involvement of Persons with HIV, heterosexual men living with HIV should be integrated in programmatic development that addresses the support and health needs of this group.

Strengths and limitations of this study

• This is the first in-depth critical examination of the help-seeking experiences of heterosexual men living with HIV.

• We did not include the perspectives of HIV researchers, clinicians, policy makers or staff of AIDS service organisations.