“I Always Wanted to See My Babies Grow Up”: Motherhood Experiences for Women Living Longer than Expected with HIV/AIDS

  • Donna B. Barnes


For women living longer than expected with HIV/AIDS, the opportunity to see their “babies grow up” becomes possible with access to improved medical care. Motherhood offers women with HIV/AIDS a reason for living and a valued position. Fifty-nine women living with HIV, from Oakland, California (n = 30) and Rochester, New York (n = 29), participated in an initial study on reproductive decisions (1995–2001). In the follow study (2005–2009), 51 women were living. The author completed face-to-face interviews with women (n = 36) for a follow-up rate of 70.6 %. Grounded theory qualitative methods of collaborative coding, memo writing, diagramming, and participant verification of analysis were used. The sample (n = 36) was predominantly women of color, with a mean age of 42.6 years. Half of the participants reported an annual household income of less than $15K. The majority had a current HIV status as asymptomatic. Most participants were single, and more than half had children living with them. Participants were living with HIV an average of 14.8 years. How women with increased longevity with HIV managed their “lost mothering” opportunities, as they defined loss, was interrelated with their attitudes about how mothers should care for their children and how participants’ related HIV stigmatization may affect their children. Mothering and reconciliation of past reproductive choices were influenced by the contexts of their social worlds and the historical contexts of the AIDS epidemic changing from a death sentence to a chronic disease. Multiple marginalization of social conditions emanate from gender, race, ethnicity and class, family relations, child custody issues, acute and chronic episodes and stage of illness, and for some, substance use and incarceration. The author developed the concept of “lost mothering” interpreting the interacting elements in situations. The findings have implications for developing innovative programs on mothering skills and assistance in reuniting families.


Foster Care Child Protective Service Death Sentence Reproductive Decision Motherhood Experience 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.



This research was funded by the National Institutes of General Medical Sciences grant GM 48135. The content is solely the responsibility of the author and does not necessarily represent the official views of the National Institute of General Medical Sciences or the National Institutes of Health. I wish to thank the women who shared their experiences and their reflections; also the consultants Sheigla Murphy, Margaret Kearney, Susan Taylor-Brown, Monica Bill Barnes, and Craig Sellers for their contributions to data analysis and valuable feedback; and Audrey Alforque Thomas for statistical analysis, and Parul Baxi and Tim Smith for statistical support, and Parul Baxi and McCoy Burford for research support.


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Copyright information

© Springer Science+Business Media Dordrecht 2013

Authors and Affiliations

  1. 1.Women’s StudiesCalifornia State University East BayHaywardUSA

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