I ALWAYS WANTED A BIG FAMILY BECAUSE I
“I ALWAYS WANTED A BIG FAMILY BECAUSE I LOST MINE”: A QUALITATIVE ANALYSIS OF PARENTING PERSPECTIVES AMONG YOUNG PARENTS WITH PERINATALLY-ACQUIRED HIV Cynthia Fair 1, Dr. PH, MSW Hannah Allen 1, BA Constance Trexler 2, MSHS, BSN, RN Lawrence D’Angelo 2, MD, MPH 1 Elon University, Public Health Studies, Elon, NC, USA 2 Children’s National Health System, Adolescent Clinical Research, Washington, DC, USA
PRESENTATION OVERVIEW Perinatally-acquired HIV (PHIV) Background Qualitative Methodology Findings: Normative & PHIV specific Discussion & Conclusions
A NEW POPULATION WITH HIV 10, 800 people with PHIV in the USA (CDC Ped. HIV Surveillance, 2012) Transitioning into adolescence and adulthood (Vijayan et al. , 2009) Managing romantic relationships and fertility desires (Bauermeister et al. , 2011) Coping with stigma and disclosure
INTERGENERATIONAL AFFECTS OF HIV-affected families – Only 1 -2% chance of MTCT in the USA (Whitmore et al. , 2012) High childbearing intentions (Fair et al. , 2013) Childhood trauma: Loss of one or both biological parents Growing up managing a feared disease Traumatic childhood experiences can greatly impact later parenting choices (Edstrom et al. , 2009).
Semi-structured interviews discussed: § fertility desires/intentions § relationships “What have been the greatest § parenting rewards of § providers parenting? ” § future goals (Fair & Albright, 2012) ATLAS. ti software used for grounded theory analysis “Is there anything else you would like to share about your experience having a child as someone living with HIV? ” M E T H O D S
DEMOGRAPHICS N=16, 14 females Mean age: 22 (range: 1829) Race/ethnicity § African American: 9 § Hispanic: 5 § Other: 2 Relationships § Committed: 9 § No relationship: 6 § Married: 1 Mean number of children: 1. 4 (range: 1 -3) § One child born HIV positive Majority unplanned pregnancies Raised by biological parent(s): 6
Parenting Concerns • Normative: Child Behavior • HIV Specific: Transmission Parenting Rewards • Normative: Child Successes • HIV Specific: Legacy Sources of Support • Normative: Emotional Support • HIV Specific: Social Support
FINDINGS
NORMATIVE EXPERIENCES Concerns Rewards Sources of Support “Because he [my child] keeps me, [thinking], ‘oh I have to do it. ’… I have to finish school. He keeps me going. ”
HIV SPECIFIC PARENTING CONCERNS Importance of medical care § “But I do the right thing. I take care of myself. Try to keep myself undetectable and stuff like that. ” Getting sick § “It’s been hard because she was living with me before I went into the hospital. When I went into the hospital I had to give her to her mom. That was hard. ”
HIV SPECIFIC PARENTING CONCERNS Mother to Child Transmission § “I mean I’m just worried in general like, even though it’s a low percent, the baby can get it, I still worry about that being of that one or two percent that my baby will get it. ” Fighting Stigma § “Just because [someone may] have HIV it doesn’t mean that they can’t do things that people who are normal can, and just because I have HIV doesn’t mean that my child has HIV. ”
HIV SPECIFIC PARENTING REWARDS Unconditional love § “You have somebody that, you know they're going to be there. You know? ” Leaving a legacy: § “When the kids grow up… they always have some of you. ” § “Just to see yourself in your child… That's one of the best things ever. ”
HIV SPECIFIC PARENTING REWARDS Having a family § “I always wanted a big family because… I lost my family and I don't really know my family like that… I don't want to say a whole bunch of kids, but at least a good amount… So my family can keep going and I can have kids, something I can leave behind in this world. ”
HIV SPECIFIC SOURCES OF SUPPORT Medical providers as social support § “I didn't know where to go. So I just came over here, and they (social workers) helped me out looking for a shelter. ” Medical providers as mentors § “Growing up… and having a great support system, whether it was camp (HIV specific) or social workers, just knowing that I could go and talk to somebody when I needed it and I want to be that person for a child, cause it’s really hard. ”
LIMITATIONS Small sample size Self-report only Limited generalizability
DISCUSSION Normative parenting themes are similar to those of typically developing adolescent parents (Huang & Kaufman, 2013; Cavazos-Rehg et al. , 2010) Experiences of loss influenced parenting perspectives (Belsky, Conger, & Capaldi, 2009; Anda et al. , 2004)
CONCLUSIONS Medical and social service clinicians in unique position to offer support Longitudinal studies are needed to document parenting experiences as offspring age § Disclosure to uninfected children (Fair et al. , 2016) § Most children will be affected not infected – HIV still affects their development § Children have special needs, but might not receive extra care
SUMMARY Mostly Normative experiences Fear of stigma, sickness, and MTCT Want to leave a legacy, create a family, find unconditional love Unique support Medical providers impact their parenting choices/ideals More research needed to best serve these parents and their children – a vulnerable group
THANK YOU Children’s National Health System – Adolescent Research Team and Burgess Adolescent HIV Clinic University of Southern California Medical Students Elon University – Elon College Fellows and Undergraduate Research Our wonderful partcipants
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