AIDS and Behavior

, Volume 21, Issue 9, pp 2682–2692 | Cite as

Stigma Management Trajectories in Youth with Perinatally Acquired HIV and Their Families: A Qualitative Perspective

  • Karène Proulx-Boucher
  • Mylène Fernet
  • Martin Blais
  • Normand Lapointe
  • Johanne Samson
  • Joseph J. Lévy
  • Joanne Otis
  • Guylaine Morin
  • Jocelyne Thériault
  • Germain Trottier
Original Paper


This study explores how family, secrecy and silence contribute to the adoption of stigma management strategies among youth with perinatally acquired HIV (PAHIV). A qualitative method was used. Eighteen youths with PAHIV aged 13–22 years old took part in a semi-structured interview. An exploratory content analysis was performed. Analyses of interviews allowed identification of two HIV stigma management trajectories, both sensitive to the family context: [1] a consolidation of family ties, which contributes to solidarity in stigma management; and [2] a weakening or dissolution of family ties, which contributes to solitary stigma management strategy. Family conditions that support the children in their efforts to develop active stigma management strategies are described. Children likely to experience weakening or dissolution family ties must build strong bonds in the clinical environment and maintain these into adulthood so as to afford them the support they need.


Adolescents Perinatally acquired HIV Parent/child relations HIV Qualitative Stigma 


Este estudio explora cómo la familia, el secreto y el silencio contribuyen a la adopción de estrategias de manejo del estigma entre los jóvenes con HIV adquirido perinatalmente (HIVAP). Se utilizó un método cualitativo. Dieciocho jóvenes con HIVAP y con edades entre los 13 y los 22 años tomaron parte en una entrevista semi-estructurada. Se llevó a cabo un análisis de contenido temático. El análisis de las entrevistas permitió la identificación de dos estrategias de manejo del estigma asociado con el VIH, ambas sensibles al contexto familiar: 1) Consolidación de los lazos familiares, lo cual contribuye a un manejo del estigma de manera solidaria y 2) Debilitamiento o disolución de los lazos familiares, lo cual contribuye a una estrategia de manejo del estigma solitaria. Las condiciones familiares que apoyan a los niños en sus esfuerzos para desarrollar estrategias activas de manejo del estigma, son descritas. Los niños más propensos a experimentar lazos familiares rotos deben construir vínculos fuertes en el entorno clínico y mantener estos hasta la edad adulta de manera que se les preste el apoyo que necesitan.



We wish to thank the participants in this study for so generously sharing their feelings, perspectives and experiences.


This study was funded by Fonds québécois de la recherche sur la société et la culture (FQRSC) (grant number 2007-AC-118689) and by Graduate Scholarships by the Fonds de recherche Santé Québec (FRSQ).

Compliance with Ethical Standards

Conflict of interest

Karène Proulx-Boucher declares that she has no conflict of interest. Martin Blais declares that he has no conflict of interest. Mylène Fernet declares that she has no conflict of interest. Normand Lapointe declares that he has no conflict of interest. Johanne Samson declares that she has no conflict of interest. Joseph J. Lévy declares that he has no conflict of interest. Joanne Otis declares that she has no conflict of interest. Guylaine Morin declares that she has no conflict of interest. Jocelyne Thériault declares that she has no conflict of interest. Germain Trottier declares that he has no conflict of interest.

Ethical Approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed Consent

Informed consent was obtained from all individual participants included in the study.


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Copyright information

© Springer Science+Business Media New York 2017

Authors and Affiliations

  • Karène Proulx-Boucher
    • 1
  • Mylène Fernet
    • 1
  • Martin Blais
    • 1
  • Normand Lapointe
    • 2
  • Johanne Samson
    • 2
  • Joseph J. Lévy
    • 1
  • Joanne Otis
    • 1
  • Guylaine Morin
    • 2
  • Jocelyne Thériault
    • 1
  • Germain Trottier
    • 3
  1. 1.Département de sexologieUniversité du Québec à MontréalMontrealCanada
  2. 2.Centre maternel et infantile sur le SIDACentre hospitalier universitaire Sainte-JustineMontrealCanada
  3. 3.École de service socialUniversité LavalQuebecCanada

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