The Mission of the The Mission of the Family Support NetworkFamily Support Network

…to promote and provide support for families with children who have special needs,

premature births, and chronic

illness.

FSN of Northeastern NC

FSN of Region A

FSN of Southeastern NC

FSN of Southern Piedmont

FSN of Wake County

FSN of Western Carolina

FSN of Mecklenburg County

FSN of Northern Piedmont

FSN of the Sandhills

FSN of Central Carolina

FSN of Eastern NC

FSN/Hope Network

FSN of Greater Cape Fear Region

FSN of Greater Forsyth

FSN of the High Country

FSN of the Crystal Coast

FSN of the Foothills

September 2007

Family Support Networkof North Carolina

““Families are at a very vulnerable time Families are at a very vulnerable time during the birth & recovery of a sick infant. during the birth & recovery of a sick infant. They need support & nurturing to be able They need support & nurturing to be able to parent their fragile infant. Our focus to parent their fragile infant. Our focus must be to support the family unit for they must be to support the family unit for they are the one constant in this infant’s life.” are the one constant in this infant’s life.”

Ann Ramirez, Mission Hospital, Asheville.Ann Ramirez, Mission Hospital, Asheville.

Family Support Network Family Support Network Presence in Hospital NICU’sPresence in Hospital NICU’s

58% (262 of 452) of the NICU beds 58% (262 of 452) of the NICU beds in North Carolina are served by in North Carolina are served by Family Support Network Programs.Family Support Network Programs.

Additional NICU’s have family Additional NICU’s have family support activities through support activities through programs such as March of Dimes programs such as March of Dimes and Smart Start.and Smart Start.

The Value of Connecting The Value of Connecting FamiliesFamilies

• Connects families to others who have had similar experiences

• 80% of families reported a reduction the sense of isolation

• Increased knowledge of special health care needs and available resources

• Increased confidence in parenting

““Family-centered care and the Family Family-centered care and the Family Support Network are a vital part of Support Network are a vital part of comprehensive care for critically-ill comprehensive care for critically-ill newborns. FSN services and resources newborns. FSN services and resources help our NICU families and staff to deal help our NICU families and staff to deal with the many stresses and challenges with the many stresses and challenges that come with neonatal intensive care.”that come with neonatal intensive care.”

Dr. Stephen Engelke, neonatologist, PCMHDr. Stephen Engelke, neonatologist, PCMH

“I will never be able to say thank you enough for the support andencouragement given to me and my family. “

Best practice supportsBest practice supports

• 24/7 family presence in NICU.24/7 family presence in NICU.• Parent’s included as part of the Parent’s included as part of the

team team

on rounds.on rounds.• Family Advisory Councils. Family Advisory Councils. • Increased patient safety/reduce Increased patient safety/reduce

medical errors.medical errors.

Services Offered to FamiliesServices Offered to Families by Hospitals by Hospitals

Number of hospitals=11Number of hospitals=11Not all hospitals responded to all questionsNot all hospitals responded to all questions

Hospitals that offer

Hospitals that do not offer

Parent-to-parent matching 10 1

Family resource room 5 4

Lending library 7 2

Computer access to the internet 7 2

Sibling support 8 2

Does the hospital policy Does the hospital policy encourage family presence in encourage family presence in

the NICU?the NICU?Number of hospitals=11Number of hospitals=11

Not all hospitals responded to all questionsNot all hospitals responded to all questionsAlways or

most of

time

Sometimes

Not often or not at

all

During shift change 2 1 7

During admission 4 4 2

During procedures 0 5 4

During rounds 4 0 6

24 hours/day 3 0 6

““The care we provide infants at the start The care we provide infants at the start of their lives is just the beginning. It is of their lives is just the beginning. It is imperative that we also care for, imperative that we also care for, support and educate their families so support and educate their families so that the good intentions we put in place that the good intentions we put in place early can be nurtured and carried forth early can be nurtured and carried forth to greater fruition.” to greater fruition.”

Dr. Paul Fairgay- Mission Hospital, Dr. Paul Fairgay- Mission Hospital, AshevilleAsheville

“Thank you for valuing my opinions.”

The Value of PFCC The Value of PFCC

• Family-centered careFamily-centered care• Family educationFamily education• Facility designFacility design• Quality improvementQuality improvement• Patient safetyPatient safety• Developmental careDevelopmental care

• Pain managementPain management• Discharge/transition planningDischarge/transition planning• Hospice/palliative careHospice/palliative care• Bereavement supportBereavement support• Ethics/infant care reviewEthics/infant care review• Diversity/cultural competenceDiversity/cultural competence• Service excellenceService excellence• Research & evaluationResearch & evaluation

Changes as a result of FACChanges as a result of FACFamily Advisory CouncilsFamily Advisory Councils

(FACs) in NICUs(FACs) in NICUs— Families have a voice for their concernsFamilies have a voice for their concerns— Input on building plans Input on building plans — Specific programs addedSpecific programs added

• Memorial Service Memorial Service • Family Presence 24/7 Family Presence 24/7 • Lactation Rooms Lactation Rooms • Family Resource Room Family Resource Room • Nourishment Room Nourishment Room • Our Children's Garden Our Children's Garden • Families are involved in hand washing Families are involved in hand washing

policies policies • Families are involved in NICU video and will Families are involved in NICU video and will

be involved in the video on Parent be involved in the video on Parent Participation on Rounds-Participation on Rounds-

Family/FSN Presence on Family/FSN Presence on Hospital CommitteesHospital Committees

• Developmental care• Hospice/palliative care• Family centered care• Family Education• Quality improvement• Patient safety• Discharge/transition planning• Bereavement support• Service excellence• Ethics/Infant Care• Facility Design and Planning

Quote from Quote from Tara Bristol, UNC Hospital

“Parents should be consistently involved on all committees--NICU- and Hospital-wide, which affect patient care; parent-to-parent matching needs to be organized; regular opportunities for parents of NICU grads to host lunches/dinners for current families; need greater diversity on the Family Advisory Board.”

Recommendations Recommendations

• Bring families to the PQCNC tableBring families to the PQCNC table• Institute for Family Centered CareInstitute for Family Centered Care• Make NC a model state for NICU Make NC a model state for NICU

care.care.

Family Support NetworkFamily Support NetworkNorth CarolinaNorth Carolina

FSN-NC State Office1.800.852.0042www.fsnnc.org