The Mission of the Family 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 Network of North Carolina

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

Family Support Network Presence in Hospital NICU’s 58% (262 of 452) of the NICU beds in North Carolina are served by Family Support Network Programs. Additional NICU’s have family support activities through programs such as March of Dimes and Smart Start.

The Value of Connecting Families 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 Support Network are a vital part of comprehensive care for critically-ill newborns. FSN services and resources help our NICU families and staff to deal with the many stresses and challenges that come with neonatal intensive care.” Dr. Stephen Engelke, neonatologist, PCMH

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

Best practice supports 24/7 family presence in NICU. 24/7 family presence in NICU. Parent’s included as part of the team Parent’s included as part of the team on rounds. Family Advisory Councils. Family Advisory Councils. Increased patient safety/reduce medical errors. Increased patient safety/reduce medical errors.

Services Offered to Families by Hospitals Number of hospitals=11 Not 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 encourage family presence in the NICU? Number of hospitals=11 Not all hospitals responded to all questions Always or most of time Sometimes Not often or not at all During shift change21 7 During admission 4 42 During procedures0 5 4 During rounds hours/day30 6

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

“Thank you for valuing my opinions.”

The Value of PFCC Family-centered care Family-centered care Family education Family education Facility design Facility design Quality improvement Quality improvement Patient safety Patient safety Developmental care Developmental care

Pain management Pain management Discharge/transition planning Discharge/transition planning Hospice/palliative care Hospice/palliative care Bereavement support Bereavement support Ethics/infant care review Ethics/infant care review Diversity/cultural competence Diversity/cultural competence Service excellence Service excellence Research & evaluation Research & evaluation

Changes as a result of FAC Family Advisory Councils (FACs) in NICUs — Families have a voice for their concerns — Input on building plans — Specific programs added Memorial ServiceMemorial Service Family Presence 24/7Family Presence 24/7 Lactation RoomsLactation Rooms Family Resource RoomFamily Resource Room Nourishment RoomNourishment Room Our Children's GardenOur Children's Garden Families are involved in hand washing policiesFamilies are involved in hand washing policies Families are involved in NICU video and will be involved in the video on Parent Participation on Rounds-Families are involved in NICU video and will be involved in the video on Parent Participation on Rounds-

Family/FSN Presence on Hospital 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 Bring families to the PQCNC table Bring families to the PQCNC table Institute for Family Centered Care Institute for Family Centered Care Make NC a model state for NICU care. Make NC a model state for NICU care.

Family Support Network North Carolina FSN-NC State Office