SIDS Risk Reduction: Why do parents do what they do or not do A qualitative analysis

1. SIDS Risk Reduction: Why do parents do what they do (or not do)?A qualitative analysis Rachel Y. Moon, MD ASIP meeting September 2008

2. Racial Disparity in SIDS and Sleep-Related Deaths Different biology Different response to nicotine? Different behaviors 2x more likely to place prone (21% vs 10%) (NICHD data) More likely to place prone, even if they�re aware of supine recommendation (Rasinski, 2003) 2x more likely to bedshare (Hauck, 2002; Unger, 2003)

3. Many SIDS/SUID occur while bedsharing

4. Many SIDS/SUID occur while bedsharing In 2006, 44 infants died while sleeping with an adult (76% increase from 2005)

8. Objective To investigate, through both quantitative and qualitative methods, factors influencing African-American parents� decisions regarding infant sleep position and sleep location.

9. Methods Multimodal study of African-American parents of infants 0-6 months of age All socioeconomic status (SES) categories Initial quantitative interview (n=297 thus far): what do you do? Focus group and individual interviews (qualitative): why do you do what you do? What and who influence your decisions? Focus of this presentation will be on the qualitative data

10. Quantitative data: Sleep position What is the recommended sleep position for healthy babies is? 78.5% supine 7.7% side/supine or side 13.8% did not know 0% prone Only 38.7% believe that sleeping on the stomach places babies at increased risk for dying from SIDS Only 64% placed their babies supine last night for sleep 41.1% of parents have placed their infant prone for sleep at least once.

11. Quantitative data: Sleep location 93.9% of infants slept in the same room with one or both parents 40% slept in an adult bed with someone else at least part of last night (97% of these with parent(s))

12. Qualitative Results: Position Infant safety and infant comfort are competing reasons for how parents place their infant for sleep.

13. Influences on sleep position decision

14. Infant Safety: Reasons for supine I can better tell if they�re breathing SIDS/safety Doctor or health care professional told me Can�t move head while prone Worry about suffocation or vomiting while prone Not willing to take a chance in case it�s true: would feel guilty if something bad happened

15. Infant Safety: Reasons for prone Baby doesn�t hit or hurt self Worried about vomiting or aspiration while supine �That�s what I�m afraid of too. Like laying on his back, I did that a few times with the newest baby and I heard him. I had to run into the room. He was (making choking sounds)� and that scared me, you know. It was like he was trying to throw something up, but it was going all back down his throat. So that kind of scared me. He started doing that after I saw Dr. XXX... I said, �ok, well let me put him on his back and see what happens.� And when I heard that, that really scared me and I just rolled him back over, cleaned him up, and rolled him back on his stomach.�

16. Infant Safety: Side as compromise �I know like, how they were saying, how you [have] your baby on his/her back. The baby could have choked, like they were saying, and then on the other hand, when you lay your baby on his/her stomach the baby could smother his- or herself. So I laid my baby on the side. I think that�s the safest way, to lay your baby on the side. That�s my opinion.�

17. Infant Comfort: Prone (always) Baby looks uncomfortable on back Baby doesn�t sleep as well Baby sleeps longer and better Baby will roll to prone anyway

18. Parental needs influence decision: comfort vs. safety Physical needs Parent need for longer sleep Emotional needs Parent feels at ease with decision Parent feels that s/he�s doing the best for his/her baby Parent knows baby better than anyone is so feels that s/he is best equipped to make the best decision

19. Need for longer sleep �I have a little (laughing) naughty thing about her laying on her back, because she never got sleep. I mean, I, for two and a half, almost three months, I literally got two hours at most of sleep. I was a walking zombie, I looked a wreck, and I knew that I wasn�t able to care for her like that. And my fianc�, he was saying, �You need to try to put her on her stomach because she�ll sleep better.� I was like, �no, we can�t do that. Do not do that, you can�t do that.� But once he did that, he.. monitored her and she was able to lift her head up... she could turn her head all the way over, so I felt at ease. And she slept much longer and I got much better sleep. I was able to nurse her properly because of my milk supply was there.�

20. Perception of SIDS risk It is safe to place the infant prone as long as s/he can turn his/her head while prone. If nobody knows what causes SIDS and if babies can die on their backs, sleep position cannot be a risk factor Unless you can guarantee me that my baby won�t die if I put on her back, why should I do it?

21. Relation of sleep position and SIDS �If I know 100% all the children never died from SIDS when they laid on their back, that will convince me, but if you have one child or like 10% of the kids still on their back are not surviving on their back now, something is wrong or it�s something else missing or maybe the brain pattern or something. I don�t know.� �If they don�t know why the babies died, why does it matter which way you laid your baby?�

22. Reasons for roomsharing (� bedsharing) Space Lack of a separate room for the infant Convenience Easier to feed the baby Easier to get to the baby quickly Safety Parent can see and hear the infant Baby is too young to be in another room You�re not a good parent if you don�t have your baby with you Nothing bad will happen if I�m vigilant

23. Vigilance = safe baby �That goes back to watching. Basically, to prevent SIDS just keep an eye out, you know. It all falls back to that, definitely. Like she said, you can�t just expect that they�re not going to throw up, and if they�re on the back, they might choke; if they�re on the stomach, they might choke� Basically, SIDS is, you know, to prevent SIDS, whatever it is, just keep an eye watch on, you know, pray, and hope for the best for your baby.�

24. Reasons for bedsharing

25. Space and availability No space for a crib No crib available for baby No money to buy Someone else is sleeping in the crib

26. Convenience Easier to feed the baby Formula fed or breast fed It�s too much trouble to use a crib Don�t want to get up and walk to crib Too much trouble to set up crib Easier to check on the baby

27. Comfort Parental comfort Desire to bond with baby Parents feels more at ease because s/he feels that s/he�s keeping the baby safe Infant comfort Infant does not sleep well in crib Infant sleeps better when with parent

28. Infant Safety Want to prevent crib death Want baby within reach; feel that this is best way to protect baby and keep baby safe

29. Ability to check on baby �So I try to keep her close to me. I never put her in the bassinet. I just, It�s just to monitor her breathing, but my nurse was telling me, you know, �try to put her in the bassinet. Don�t let her in the bed with you, because you might, you know, knock her off the bed, suffocate her� or whatever but I just want to keep her close, you know, to make sure she�s breathing because she�s so young.�

30. Infant safety Central theme among low-SES parents Possibilities of kidnapping and stray gunfire

31. Protection of baby �My baby sleeps right here (points to her arms). Breaking people�s windows, kidnappings, shooting lately. Lately, I don�t know what people be selling, but they just be shooting out there. My godbrother; a guy had shot a gun down on the floor in the next apartment and my little brother, he got shot. It�s like if I hear something, oh we are going to get shot together, you know, we are going to do this together. I guess I just a little over protective.� �And you know somebody might come into your house or something�And do something to your baby, you don�t know because you are out, but if somebody was to try to get your baby from under right there where you at, or come up on you while you right there asleep, you�ll know. You�ll know something. I don�t like leaving my baby in the other room, just in the crib.�

32. Influence of the health care provider Even if parents have trust in their pediatrician, they are comfortable making decisions counter to their pediatrician�s recommendations if they feel that it's in the best interests of their infant. Health care professionals need to individualize their advice to parents. One size does not fit all.

33. View of pediatrician advice �I think a lot of the times, which I don't doubt what the doctor says or I don't disobey their orders, but they, sometimes, I go on my own though, because I'm a really experienced mom. But I think that they go off on studies, which they do because a lot of them don't have children of their own. So they all� go off on studies or tell you, well this and that, and you should do this and that, and then the following year it be different.� �It just sounds like they�re telling you to do stuff across the board, but �not checking into your particular history, your particular set of circumstances and how it best fits your lifestyle with your baby.�

34. Influence of family and friends �Also I live with my parents, so I kind of get all of their opinions and stuff �because most of the time they�re the only ones that watch my daughter, unless it�s a relative or friend, so they know the most about her.� ��I heard a smart little saying, �there were mamas before there were pediatricians.��

35. Influence of media (Internet, TV) �But honestly, I do a lot of research on the internet. Like, you know, the Baby center, and I think that�s probably how I get a lot of my little information. Just keep researching it out, researching it out, seeing what other people have said.� �Sometimes the Health channel, they really have good discussions, and I watch, but it doesn�t mean that I�m going to do it. Not to be funny but when they did the session where the mother had to walk out, they were white kids, you know what I�m saying. It�s like different things for different cultures.�

36. Conclusions: Sleep position African-American parents are aware of the Back to Sleep recommendation However, many parents do not believe that the supine position reduces the risk of SIDS Infant safety and infant comfort are competing reasons for how a parent places an infant for sleep Many parents place infants prone for safety reasons Factors influencing whether safety or comfort takes priority Perception of SIDS risk Parental needs (physical and emotional) Influence of others (including health care professionals, friends, family, and media) important primarily in validating parental decision

37. Conclusions: Sleep location Many African-American parents roomshare for economic reasons (no other place for the baby to sleep) However, an important reason that African-American parents roomshare and bedshare is their belief that this is the best way to keep their infant safe Efforts to encourage roomsharing without bedsharing must address parental concerns about safety

38. Implications For SIDS risk reduction messages to be more successful with African-American families, we need to develop messages that: Address parental concerns about infant comfort (length of sleep) Address parental concerns about infant safety Vomiting/aspiration/choking Environmental dangers Help parents to better understand their infant�s risk for SIDS Message needs to �make sense� to parents Are consistent

39. QUESTIONS?