53:55
CPN In the Room August 2024 Letâs Make Caregiving a Bit Easier with mejo and Librarey
59:00
CPN In the Room June 2024 "What If I Regret This Decision?" with Aliza Olive, MD
02:51
There was a lot of veiled language_Shorter
34:49
Two Tools for Providers of Children with Severe Neurological Impairment
57:05
CPN's In the Room Talk with Author and Mother Jessica Fein, author of Breath Taking
56:37
CPN In the Room Discover the Power of Childrenâs Books to Help Young People Understand Death & Loss
05:09
The mother of a medically complex childâs advice to clinicians: Donât call me âmomâ ⌠Donât ask my q
04:52
I knew he wasnât going to be the exception. I had to connect the dots. No one else did that for me.
01:04:15
CPN's In The Room: Book Talk with Myra Sack - Fifty-Seven Fridays
01:00:10
CPN's In the Room: Do you want to work? Do you have to work? How do you caregive and work?
02:47
NICU bedside nurses take the brunt of a lot things Watching babies suffer is always a challenge
01:16
Perinatal palliative care: What does the miracle look like?
01:56
Our role at the bedside is to partner with the family and also face the reality in front of us.
01:21
Perinatal palliative care: The language used with families is so important
01:57
Perinatal palliative care: It is possible to do intensive care and palliative care simultaneously.
02:02
Medical complexity:The importance of setting families' expectations for the load of home care
04:01
The crisis of Medicaid variability across states and the homecare nursing shortage in pediatrics.
04:02
Do parents ever say, âI didnât realize how hard caring for my child at home was going to beâ?
01:17
Caring for medically complex children at home: Helping parents know which things are most critical
02:13
Keeping the rotation of homecare nurses current with medical orders
02:33
A complex care doctor on the value of seeing the child in their home environment.
50:11
Learn About NeuroJourney
50:24
CPN's In The Room: Caregivers, Get Acquainted With NeuroJourney
02:23
Un pediatra paliativista: El cuidadado paleativo no es ciodado de hospicio o de final de vida .
02:23
Un pediatra paliativista: Cuando el lenguage o la cultura son una barrera
01:47
Un pediatra explica el cuidado paleativo pediĂĄtrico
03:45
Perinatal palliative care: End of Life is part of the Neonatalogy terrain
02:00
Parent Champion Amy Graver, mother of Lauren.
04:16
Introducing NeuroJourney 2024
04:42
Decision making over 14 months: Our goal was always for her to feel loved and be out of the hospital
01:36
âAdvice to my past self at the 20 week ultrasound: Itâs your decision at the end of the day.â
02:45
âThere are six of us, not five â
02:17
We always knew what we wanted for her . . . and so we let her go.
02:39
A life-limiting fetal diagnosis: "Our faith was already there for us, which made a big difference."
06:20
A diagnosis of heterotaxy: palliative care helped us continue the pregnancy and manage uncertainty
05:39
âI donât use the term of 'quality of life'. It labels something that is very difficult to label."
01:21
Perinatal Palliative Care: What the data says vs what is going to happen with this particular baby
04:29
A fatal fetal diagnosis: Palliative care as a bridge when parents are hurt by OBs rec to terminate.
03:46
A life limiting fetal diagnosis: Empowering but not burdening the parents as decision makers.
01:30
A life limiting fetal diagnosis: Trisomy 18 as an example of supporting parentsâ choices
02:42
A Perinatal MD:We donât really know who the parents are and how they will respond later; nor do they
03:15
A Physician defines Perinatal Palliative Care; and how families get referred
02:52
An MD on addressing a parentâs fear of making the wrong decision for their child
01:55
People adapt: Parents craft their story whether the baby lives or dies based on who theyâve become.
02:12
Perinatal palliative care: âParents can hold that uncertainty space better than we clinicians do.â
07:07
Potential pathways for unborn babies with a life limiting fetal condition: from a perinatal MD.
01:33
"The uncertainty of fetal diagnosis is dramatic. We donât box parents into a decision."
02:07
Trisomy 13 and 18 - Parents are now asking: âWhat if we did try to push a little further?â
04:42
Perinatal, Neonataology and shared decision-making: When parents ask the doctor for a recommendation
02:47
A perinatal MD notes the pros and cons for parents of social media and special interest groups
01:03
Perinatal palliative care: "The hospital helped us have a dedication ceremony in our delivery room"
01:57
Fear of regret: "I have a lot of compassion for people making these decisions "
03:22
Our newbornâs end of life: âHis life was short, beautiful, what it was meant to be.â
03:28
Pregnancy after child loss: The anxiety, âThe way I have coped is to assume the worst."
03:18
Perinatal palliative care âgot to know us and heard our hearts; they counseled us through birth."
02:32
Child Loss and Grief: âHave grace with your spouse.â
02:04
Finding support: âOur faith community really held us up.â
06:34
Decision-making about quality of life, with no judgement: "The medical field has advancements that o
06:47
Considering terminating pregnancy:We decided to let his little life be whatever God wanted it to be.
03:28
Perinatal palliative care: A diagnosis in utero of holoprosencephaly
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About
Courageous Parents Network channel features videos of parents of children with serious, life-threatening illness sharing their experiences across a wide range of psychosocial and emotional issues. It is not disease specific but is for anyone who is seeking community and a desire to hear from other parents to know that they can do this. Issues explored include: coping with the diagnosis, spirituality, marriage, caring for the other healthy children/siblings, working with the medical team, self-care, control, decision-making and palliative care, questions about end-of-life, transitioning to end-of-life, bereavement, parental identity, and meaning making. Videos also include a pediatric psychologist and grief counselor who frames the issues, a palliative care doctor, a palliative care nurse, and a chaplain.
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