Addressing the Needs of a Diverse NICU Parent Population

Transcription

1 Addressing the Needs of a Diverse NICU Parent Population Keira Sorrells, Preemie Parent Alliance Nick Hall, Graham s Foundation Julie Howard, It s a Preemie Thing Kelli Kelley, Hand to Hold Kristy Love, National Perinatal Association Bob Selby, Holding Tiny Hands Keri Walko-Henry, Fragile Beginnings

2 Disclosure Statements Keira Sorrells, Nick Hall, Kelli Kelley, Bob Selby, Julie Howard, Kristy Love, Keri Walko-Henry We have no relevant financial relationships to disclose or conflicts of interest to resolve. We will not discuss any unapproved or off label, experimental or investigational use of a product, drug, or device.

3 Prematurity Does Not Discriminate Photo credits: Naomi Levit Photography & Preemie Prints

4 Objectives: 1. Differentiate needs of certain subpopulations of NICU parents so psychosocial support & care interactions can be individually tailored. Photo credits: Naomi Levit Photography & Preemie Prints

5 Objectives: 2. Identify common communication barriers between NICU parents and their infant s care team.

6 3. Examine effective strategies to overcome these barriers Objectives:

7 Objectives: 4. Uncover resources available to support your NICU staff in providing the proper psychosocial support for your NICU parents

8 chubby the misfit shy Childhood Labels Daddy s girl or Momma s boy class clown never on time little miss smarty pants

9 How are you perceived today? Dr. Statistics Dr. Grumpy Pants Dr. Educator Dr. Laid Back Dr. Shoulder to Cry on Dr. McCool Dr. Dismissive Dr. Doomsday

10 PARENT A 17 yr old mother Senior in high school Recently married to and lives with baby s father, also 17 yrs old Father in Naval Academy Daughter born at 35 weeks due to preeclampsia

11 Kristy Love, Director of Operations National Perinatal Association NICU Family Advocate, Mercy Children's Hospital Numb and scared Natural delivery Bed rest for four weeks Delivered at 35 weeks due to preeclampsia Jessica 5 lb. 13 oz.

12 Teaching Points Teen parents require a little more TLC, they are scared and often feel judged. Sit down next to or across from them, look at them when delivering information or answering questions. Encourage them to ask questions. Follow up with them every time you see them. Check in on them even if they re not on your team anymore.

13 PARENT B 48 year old father Police officer Wife delivered at 25 weeks due to HELLP

14 No, I m not Grandpa

15 Bob Selby, Executive Director Holding Tiny Hands TWO CHILDREN BORN PRETERM (a.k.a. The Repeat Offender) JACK delivered at 25 weeks due to HELLP 764 grams 84 days in NICU TOMMY delivered at 28 weeks due to HELLP 965 grams 120 days in NICU

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17 Fear

18 Teaching Points Don t assume a Dad of mature age has his act together. Mature age may = set in our ways. Change can be difficult to accept. Make Dads a part of the solution.

19 PARENT C 27 yr old mother Married, 1 st pregnancy Works as a Child Life Specialist Baby born at 32 weeks via emergency c- section

20 Keri Walko-Henry Jewish Family & Children s Services Fragile Beginnings Program WILLOW Painless funneling & dilation Emergency c-section Delivered at 32 weeks 3 days 4 lb. 1.5 oz.

21 Teaching Points Invite the parents/caregivers to sit down. Open-ended, support-based questions Repeat, repeat, repeat! Use the baby s name and comment on something unique to them.

22 PARENT D 41 yr old mother Baby result of IVF Married, father not from the US Baby with brain malformation, born 29 weeks due to severe preeclampsia & HELLP Mother is an Army Major

23 Julie Howard It s a Preemie Thing Terminal Diagnosis at 18 weeks Preeclampsia at 28 weeks, progressed to HELLP Delivered at 29 weeks 2 lb. 5 oz. Diagnosed with Rhombencephalosynapsis SPENCER

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25 Teaching Points Parents need to know you will do everything for their baby, even when given a terminal diagnosis Will this be my last day with my baby? Provide local resources and services for every family, including counseling during and after their NICU stay.

26 Time to Reflect How have the labels changed? Will your interactions change as a result?

27 BREAK TIME

28 Breaking Down Barriers Meeting the Psychosocial Needs of your NICU Families Kelli D. Kelley Founder & Executive Director Photo credits: Naomi Levit Photography & Preemie Prints

29 Common Barriers to Communication Parents emotional state shock, anxiety, depression, anger, grief If they tell you they put themselves at risk Language actual language barriers, unfamiliar terms and medical jargon Culture of the NICU do parents feel welcome/involved/valued Professionals attitudes presumptions, biases and negative assessment of parents and colleagues Content Hand to Hold

30 Breaking Down Barriers Start from the belief that: Every parent loves their baby. Every parent wants what is best for their baby. Every parent is resilient. Every parent is competent. Content Hand to Hold

31 First Need: Accurate information and inclusion in the infant s care Education starts on the first day of a NICU stay, not at the time of discharge. Assess parents emotional state Write things down Check for understanding Actively invite questions Content Hand to Hold

32 First Need: Accurate information and inclusion in the infant s care Actively include parents in their baby s care. See & touch the baby Ask them what is important to them Explain how decisions are being made and why (model behavior) Actively invite questions Suggest things they can do Content Hand to Hold

33 Second Need: Vigilant watching-over and protecting the infant. Parents understandably want to protect their baby and be with them, but they are also afraid. Will they survive? Are they in pain? What should we do? What is my role? Parents feel powerless to help their baby Content Hand to Hold

34 Third Need: Contact with the infant Parents need to bond with their baby and feel connected to them. See & touch their baby. Talk to & care for their baby. Do normal parent things. Content Hand to Hold

35 Fourth Need: Being positively perceived by the nursery staff Parents need to feel like you value them and want them to be there. Content Hand to Hold

36 Fifth Need: Individualized care Validate their concerns Listen to their questions Offer opportunities to learn Ask questions Content Hand to Hold

37 Sixth Need: A therapeutic relationship with the NICU staff Recognize your ability to either positively or negatively impact the parent-infant relationship Content Hand to Hold

38 Four behaviors were identified to meet parents needs during a NICU stay: Emotional support Parent empowerment A welcoming environment with supportive unit policies Parent education with an opportunity to practice new skills through guided participation - Parenting in the NICU by Lisa M. Cleveland (2008), Journal of Obstetric, Gynecologic, & Neonatal Nursing. Volume 37 Content Hand to Hold

39 Engaging & Partnering with Preemie Parents Nick Hall, Founder and President

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41 Engaging & Partnering - Survey Number of Responses 250 Your NICU Attendance 32% Every day, all day 48% Every day, not all day 8% Couple times a week 2% Rarely Location US (44 states) Canada, New Zealand Race 91% White 4% Hispanic or Latino 3% Asian / Pacific Islander 2% Black or African American Gender 96% Female 4% Male Marital Status 90% Married or domestic partnership 6% Single, never married 2% Divorced 2% Separated Age 4% % % % Nick Hall, Graham s Foundation

42 When your baby was first admitted to the NICU, what did the staff provide you with, to help you better understand the NICU? They had a social worker speak with me. Went over basic things in regards to my daughters care. I had to learn a lot on my own by doing research online. It was rough. Nothing was provided but they were exceptional at communicating. A friend bought me a preemie book the was amazing the first few weeks. Nothing. There was a binder in her room with that info that no one explained to me for several weeks. In the beginning of her stay in the NICU, some of the nursing staff and my daughter's social worker provided me with a little bit of information, but it was a lot of "wait and see". I really had no guidance and felt so overwhelmed and alone through the entire process Hospital book with helpful information and contact numbers. Mainly about how to care for a preemie, emergency numbers, breastfeeding support information. Sadly we were not provided any information. No pamphlets, recommendations to websites with information about preemies or things of that nature. Any information we received was primarily given to us by the nurses. In hindsight something to give new parents to this environment would have been extremely beneficial. We found a folder in the closet of our room that was supposed to have been presented to us the day our child arrived. Nick Hall, Graham s Foundation

43 Did your NICU offer any sort of parent get together on a regular basis? 56% No 44% Yes Nick Hall, Graham s Foundation

44 If yes, how often did you attend? 48% Never 23% Sometimes 17% Always 12% Rarely Nick Hall, Graham s Foundation

45 Did your NICU encourage kangaroo care when you were with your baby? 51% Yes 36% Sometimes, but it depended on the nurse or the shift (day / night) 13% No Nick Hall, Graham s Foundation

46 Were you encouraged to participate in your baby s weekly development rounds? 63% Yes 22% No 15% What is that? Nick Hall, Graham s Foundation

47 Did you ever have to ask that a particular nurse not care for your baby for any reason? 56% No 44% Yes Nick Hall, Graham s Foundation

48 How often did you engage with your NICU's social worker? 47% Rarely 34% Sometimes 19% Often Nick Hall, Graham s Foundation

49 How would you rate the value you received from your NICU's social worker? 34% Okay 34% Sorely Lacking 32% Awesome Nick Hall, Graham s Foundation

50 How would you rate your hospital's approach to family centered care? 48% Great, we really felt included and part of the care team from the start 37% Okay, they are trying but have a ways to go 15% Sounds like a nice idea but they don t have a clue Nick Hall, Graham s Foundation

51 Did your NICU offer any particular types of tools or programs that you were aware of to help support you emotionally? 66% No 34% Yes Nick Hall, Graham s Foundation

52 How well did the NICU prepare you for your transition home? 57% We had everything we needed 33% We got some tips and information but needed more 10% We got very little and felt completely alone and overwhelmed at home Nick Hall, Graham s Foundation

53 Anything else you would want to share about your level of engagement and support with your NICU, either positive, negative or constructive? My daughter was in two NICU's, I saw firsthand the vast differences there can be. The first was more open which created an environment where all the staff got to know you. Sometimes nurses made me feel like I was a burden for asking so many questions. The NICU was not a place I felt comfortable in. I would be by my daughters side 15 hours a day and parents had to sit in an office chair next to their child. Sometimes there weren't any chairs available and we had to stand. Wish there was more outreach to other parents such as parent support groups, wish there was option for parents to stay overnight. I wish I would have felt more comfortable to go to the family support groups, but I was dealing with PTSD and kind of avoided them. Nick Hall, Graham s Foundation

54 Effectively Partnering with Preemie Parents What Matters is What You Measure if you don t Measure it...it doesn t Matter Nick Hall, Graham s Foundation

55 Effectively Partnering with Preemie Parents Customer (Preemie) Value Triangle You (NICU Staff) Partner (Parents) = 3 Nick Hall, Graham s Foundation

56 The 4 C s of Effective Partnering Champion Capability Competency Culture Nick Hall, Graham s Foundation

57 Life s True Measure is not the Days Lived but the Lives Touched - Nick Hall

58 Building a Strong Foundation Family That Thrives Trusting Relationship with Family Empowered Confident Parents Understand Parents Crisis Respond Appropriately To Parents Crisis Family Engagement TOGETHER

59 NATIONAL RESOURCES FOR YOUR FAMILIES

60 Preemie Parent Leaders The Preemie Parent Alliance represents organizations that provide support to parents of preemies. We are committed to supporting the growth & development of our members to help improve the quality & effectiveness of the services they provide.

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64 Representing the Voice of the Preemie Parent

65 Program Standards for Psychosocial Support of NICU Families 50+ professionals representing 25 professional & parent support organizations from 26 states & 22 academic institutions including but not limited to: American Academy of Pediatrics, Perinatal Section (AAP) American Psychological Association Association of Women s Health, Obstetric and Neonatal Nurses (AWOHNN) Council of International Neonatal Nurses National Association of Neonatal Nurses (NANN) National Association of Neonatal Therapists (NANT) National Association of Pediatric Nurse Practitioners (NAPNAP) National Association of Perinatal Social Workers (NAPSW) National Perinatal Association (NPA) National Premature Infant Health Coalition (NPIHC) Preemie Parent Alliance (PPA) Society of Maternal Fetal Medicine (SMFM) Society of Pediatric Psychology Transcultural Nursing Association

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67 You ve got questions We ve got answers!

68 Growing up Preemie

69 Look How Far I ve Come! Your photo will go here Your photo will go here Your photo will go here Jessica is a very loving, caring, young lady and an amazing big sister who loves to be with her family every chance she gets. She is getting her Bachelor s Degree in Early Childhood and Special Education. She works at a daycare / preschool with Newborns through Pre-K. And Jessica has fallen in love.

70 Look How Far We ve Come! Tommy is a funny and stubborn 6 year old in Kindergarten. He has dealt with chronic lung disease, renal disease w/ hypertension and severe GERD. Today he is a free spirit who loves life and everything in it! Jack is 8 years old in 2 nd grade. He battled CLD, PDA, & ROP. Today he is a sensitive and very compassionate little boy who now enjoys being in Cub Scouts and Catechism.

71 Look How Far I ve Come! Your photo will go here Your photo will go here Willow is a spunky, outgoing, chatty 4 year old. She attends preschool and will go to the public kindergarten next fall. She graduated from Early Intervention at 1 year actual and receives no extra services at this time. She enjoys dancing, gymnastics, science experiments, music, fairies and dragons.

72 Look How Far I ve Come! Reece is a sweet, sensitive 8 years old currently in 1 st grade. Deals with migraines, asthma, ADHA, low muscle tone, hydrocephalous, some developmental delays Loves to singing, art, music & creative play.

73 Look How Far I ve Come! Spencer is a happy, funny, sarcastic 5 YO little boy. Rhombencephalosynapsis, Strabismus, ADHD Attends private Montessori pre-k receiving physical therapy He has struggled with balance issues, which have lead to being stitched up 7 times.

74 Summary Understand barriers to communication. Respond appropriately to those barriers. Actively engage parents. Your impact on these lives stretches well beyond the doors of the NICU.

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