Family Integrated Care (FICare): Transforming NICU s Karel O Brien Marianne Bracht Objectives At the end of this session attendees should be able to Describe what FICare is Appraise the results of our research to date Disclosures We have nothing to disclose related to this presentation 1
Estonia 2010 The mother and infant should be considered as a closed psychosomatic system. Everyday ward rounds should focus not only on the infant but also on the needs of the mothers. Dr. Adik Levin Acta Paediatr 1999;88:353 5 Our road to FICare Dr Levin s Humane Care Mother stays with her preterm baby 24 hours/day Supported by nursing midwife & psychologist Skin to skin, breastfeeding Acta Paediatr 1999;88:353 5 How could we take this philosophy and create a model that would work in Canada? 2
Guiding concepts Guiding concepts Mutual dependency of the parent infant dyad Family centered approach, cultural context Parent co lead on the workgroups Review of literature Parental NICU experience Parenting a critically ill infant Therapeutic nurse patient relationship From idea to REB application: Parents on the journey Veteran parents were invited in at the very beginning as key team members to translate this idea to practice Literature review Protocol development Visioning a day in the life of Development of charting tools and consent forms Anticipated problems Philosophy of FICare Acceptance that parents are part of the team and that their presence is critical to their child s wellbeing Understanding that families need to learn how to take care of their baby and how to work with the healthcare team. Daily multi disciplinary education sessions Parents presenting on rounds Care plan Parents charting Acceptance and support of parent role in decision making Promotion and support of peer to peer support/veteran parent engagement in program development and education. Parents parenting in the NICU! 3
Parental Involvement Franck et all. (2011) Principles of Family Integrated Care Core strategies of Family Integrated Care were interwoven into the principles of Family Centered Care Principles of Family Integrated care Patients and families build on their strengths by participating in experiences that enhance control and independence Mothers are collaborators in their infant s care Parental learning is facilitated 4
Principles of Family Integrated Care People are treated with respect and dignity The family are invited to participate to the best of their ability and supported to do so Principles of Family Integrated care Health professionals share complete information with patients and families Parents participate on rounds Nurses are provided with tools and education to enable families to be part of the team Principles of Family Integrated care Collaboration occurs in policy and program development, professional education and delivery of care Infant holding and mothers being present at their baby s bedside is supported by unit policies, physical and environmental supports The entire care team supports the model of care 5
Family Integrated Care (Pillars) Parent education and support Staff education and support Environmental supports Psychosocial supports Parent education: teaching parents what they do not know Providing experiences that enhance parents control and independence and support their role as caregivers in the NICU Parent curriculum delivered in small group education sessions Coaching by bedside nurses Parent skill checklist/parent chart Parents presenting on rounds Staff education: teaching staff to support families Administrative/leadership and commitment Providing staff education, support and tools so that staff can support families as they grow to become part of the team Nursing education workshop curriculum Staff/parent communication tools (parent chart, white board, skills checklist) Ongoing staff education Parents/families were invited to collaborate in professional education of interdisciplinary team members 6
Psychosocial supports Peer to peer support Veteran parent support group support or one on one support Group social work and midwifery support NICU environmental supports Unit policies to support infant holding and mothers being present at their baby s bedside Unit practices to support parent engagement Environmental support for prolonged parent/family presence at the bedside chairs, breast pumps, parent rest space, food preparation area, parent meeting area. parent education space Making FICare happen Formal structure Steering committee with representation from all disciplines including veteran parents and nurses Workgroups with a parent lead in each group Administrative support and make sure that the project is aligned with the values of your institution 7
management The goal of TLC is to truly embrace the full scope of Patient and Family Centred Care. 4/12/2016 Baby steps Leadership buy in Interdisciplinary approach Think small initially Build alliances Build credibility Anticipate obstacles Work with what you have Yes and Evaluate Communication Keep everybody informed about the plans Town hall Coffee morning Use different methods to provide that information Eduquicks Screen savers Pocket cards Poster boards FiCare so what does that really mean... The rumor mill Myths and truths Is our work no longer valued? Are we going to lose our jobs? Are we going to have more work? What about our nursing license? TLC Project An exciting new Teaching, Learning, Caring Project In our NICU! Myths Truths Parents will be looking after their sick micro-preemies Parents will be taking on advanced clinical nursing skills Parent will be at the bedside 24 hrs a day, 7 days a week The primary aim of the TLC project is to get rid of nurses Only stable non-vented babies will be eligible to be enrolled in this pilot study. Some may be infants who were born extremely preterm and are now growing/feeding infants but many may be the larger preterm infants 30 to 35 weeks gestation. The professional responsibility and accountability of nursing will remain the same as curren t practice. Nurses will train parents to give basic care to their baby, such as: oral feeding, bathing weighing etc. Nurses will be asked to teach, coach and support parents in taking on a more active role as caregivers to their infants. During the course of the pilot, parents will be asked to make a commitment to stay in the hospital for 8 hours a day, primarily during day shift to allow them to participate in formal teaching sessions. We will be seeking ongoing feedback from nurses and parents as to how this schedule works for them and if it needs to be modified. There is no intent to reduce the nurse to patient ratio. Parents very much want nursing ratios to remain the same. They only want to become actively involved in the care of their infant, with the expert coaching of ever-present nurses. The TLC project has been a top down initiative coming from NICU This project will broaden and strengthen nurses role in the NICU as primary care providers and advanced skilled care givers. Nursing has been involved since the beginning nurses traveled to Tallin, Es tonia and have been actively involved in the Steering Committee giving a voice to nurses. For more information, please talk to TLC project nurse Tenzin Dicky at tdicky@mtsinai.on.ca. 8
Engagement Build alliances particularly with front line staff Work though myths and truths of FICare Get feedback re how processes might work/challenges How will this affect my work? Do site assessment re educational needs/support required Develop a collaborative & responsive plan Do what you can with what you have Parental Involvement FICare Pilot Project Pilot start date: March, 2011 Expected length of study: 12 months Number of patients needed: 40 patients Location 4 bed spaces reserved in Level II FICare area Time Commitment for Parents Minimum 8 hours each day during day Inclusion Criteria: <35 weeks gestation On low level respiratory support A primary caregiver parent, willing and able to commit to spending 8 hours per day with their baby between the hours of 0700 and 2000. Parental consent Exclusion criteria: Palliative care Severe congenital anomaly. Critical illness (unlikely to survive) Parental request for early transfer Parental inability to participate. 9
What was different for nurses? The nurse parent partnership is foremost Provide parent mentoring and education at bedside Sign off on parent acquisition of skills Support increased skin to skin care Support parents presenting on rounds Support parents charting What is the same for nurses? Nurse to Patient ratio Nursing clinical responsibilities and accountabilities Nurse charting Care provided in accordance with College of Nurses Ontario (CNO) standard Challenges The changed role of nurses From doer to supporter Partnership rather than control Educator+++ Champion/advocates Unit culture shift 10
FICare for parents Participate in care Participate in decision making Have access to information Better communication Emotional support Challenges Parent Participation Parents understanding their role Mother s health/childcare/distance Sustaining parent education sessions Sustaining veteran parent support Attending rounds Pilot study: Who were the parents who participated? 42 mothers (4 sets of twins) 17 (40%) had other children at home 22 (55%) were Canadian born; 11 lived in Canada >10 years All had at least grade 10 high school education; 27 (71%) were employed outside the home Varied in age from 23 45 years (mean 33 years) 11
Pilot Study: Key Outcomes Babies in the family integrated care group 9% improved weight gain over the controls There was less nosocomial infection There was less ROP There were fewer incident reports Higher breast feeding rates 85% of the infants went home on >90% breast milk Most of those were actually breast fed on discharge Parental stress scores decreased significantly over time A pilot cohort analytic study of Family Integrated Care in a Canadian neonatal intensive care unit. BMC Pregnancy Childbirth, Volume 13 Suppl 1:S12, 2013 FICare crct Hypothesis: Infants whose families complete the FICare program will have greater weight gain and better clinicla and parental outcomes compared with infants provided with standard NICU care Methods: crct in infants born <33 weeks gestation admitted to 19 Canadian, 6 Australian and 1 New Zealand tertiary level NICU Note : parental consent required for both arms Inclusion/exclusion Inclusion: <33 weeks gestation Low level or no respiratory support Parent commitment to spend 6 hours per day between 7am and 8pm to enable attendance at rounds Expected to stay 3 weeks in the program Exclusion: Palliative care Major life threatening anomaly Critical illness unlikely to survive High level respiratory support Scheduled for early transfer Parent inability to participate e.g. health, social or language issues 12
Training of the Intervention Sites Two sides of NICU FICare training 2 day workshop and site visit to MSH 2 day site assessment by FICare team (checklist and feedback) Video conference with site steering committee meeting Communication +++ with site team Monthly teleconferences 13
Workshop 3 members from each site Introduction to Family Integrated Care Understand the benefits/core concepts Understand the requirements for implementation FICare workshop: Agenda 1 What is FICare Baby steps to implementation Planning and Engagement Pillar 1: Staff (Nurse)education program Pillar 2: Parent education program Pillar 3: Peer to peer support/veteran parents Pillar 4: NICU environment and policies FICare workshop: Agenda 2 Day in the life of parent and nurse Presentation from a veteran parent Panel with NICU team members at MSH Mock demonstrations/unit visit Parent education group Parents on Rounds FICare in action 14
Preparing for FICare Site readiness assessment How can the pillars be implemented in your environment/social context? What resources do you already have? (people, space) Can you leverage resources elsewhere in the hospital, at the university,? Department of nursing? Who are your allies? Making FICare happen Formal structure Steering committee with representation from all disciplines including veteran parents and nurses Workgroups with a parent lead in each group Administrative support and make sure that the project is aligned with the values of your institution Staff Concerns Expertise not valued No clear role Outsiders to care Stress and confusion Lack of control Lack of time Parents always at bedside & watching No down time 15
Staff education and support: Pillar 1 To provide staff with the skills and tools to educate, mentor & support parents to care for their infant All staff play a role in the successful implementation of FICare & require education in the model Nurses are the main facilitators of FICare Education and training program reflects this Designing nursing education Review of literature Develop educational philosophy Use adult learning principles Develop teaching strategies Do a nursing needs assessment Create education template Sample lesson plans provided to all sites Nursing education topics Based nursing survey response Therapeutic nurse parent relationship Mental health Communication/mentoring Development Breastfeeding Veteran parent experience Day in the life Template provided for each of these topics 16
Education template Title Key Messages Effective communication Learning Objectives Upon completion of the session Activities and Discussion Points Learning can be supported by Resources Expectation: individual site workshop requirements Provide a program with similar content based on site needs Supported by Nursing Unit Administrator Mandatory education 4 hours (?Paid) Different ways of providing the education (day/night) At least 90 % staff to be trained (mandatory education part of research contract) Therapeutic nurse parent relationship Building helping healing relationships & understanding the parental experience Neonatal nursing practice o Perils of technology Therapeutic nurse parent relationship 17
Mental health Impact of having an infant in the NICU Postpartum Blues common, support Postpartum Depression anxiety, guilt, treatment needed Postpartum Psychosis psychiatric emergency Resources and community supports Consider entire family in treatment Communication, mentoring, challenging situations To identify challenging situations, how to maintain healthy partnerships while participating in infant(s) care Interactive session exploring different strategies to solve challenging situations encountered at the bedside Impact of prematurity on development Autonomic system under developed 2 known causes for alteration in brain development: stress & pain Fearful and vulnerable Sleep deprivation Ability to self regulate severely diminished 18
Developmentally responsive care Promote normal development Position and handling to increase motor organization Promote self regulatory ability Increase neurobehavioural stabilty to support neurologic system (neuroprotection) Decrease sensory overload, reduce physiologic distress, reduce disorganization Decrease iatrogenic consequences Breastfeeding Pumping/hand expression Early frequent Stimulation E learning modules Dolls/pumps/nipple shields Resources in hospital and at home Progression of Breastfeeding Review Breastfeeding Assessment/STIMMS Handouts for families Community follow up Implementation Staff coordinator Agenda, educator support Staff educators Depends on program Program agenda for the week Based on need/participants Veteran parents Invited as group co leads Educational materials Videos/props Individual support Follow up, bedside 19
Parent presentation To share how important your role is in the life of our families not just the outcome of our preterm babies What works, what could work better Veteran role in FICare Picture by a 4-year old NICU graduate, born at 880 grams A day in the life of an NICU parent Parent education: Pillar 2 20
Initiating a program: baby steps Think small initially Anticipate obstacles Work with what you have Evaluate Interdisciplinary approach Assess need Build alliances Credibility Neonatal Netw. 1998 Apr;17(3):33-7. Implementation Staff coordinator Agenda, educator support Staff educators Depends on program Program agenda for the week Based on need/participants Veteran parents Invited as group co leads Educational materials Videos/props Individual support Follow up, bedside Parent education program: topics Growth and Development Self Care NICU basics Understanding your baby Breastfeeding and pumping Advocacy Decreasing infection Planning for discharge The first weeks at home Parenting Veteran parents experiences as lead/co lead Lesson plan templates provided to all the sites on all the topics (n=24) 21
Evaluation Sharing of emotions is as important as practical knowledge Parent education program needs to be supported by bedside teaching and parents presenting on rounds Mock demonstrations Parent group Parents presenting on Medical Rounds Peer to peer support: Pillar 3 Small group education sessions Validates feelings, reduces isolation and increased parents comfort dealing with medical professionals Space for families to congregate Lounge, pump room Opportunities for peer to peer must be provided and supported by staff 22
Peer to peer support: role of veteran parents Enable parents to feel more at ease by using own experience Listening, methods of coping, practical tips, hope, an end to potential isolation Provide support one on one bedside Small group education that also create opportunities for parents to connect Provide information, NOT medical advice Other role of veteran parents Educate Clinicians Parental experience & perspective Sit on hospital committees to provide valuable input and recommendations from the family perspective Research 68 Coming back as a veteran parent: psycho social support Self awareness and personal adjustment: coming back in a different role Personal reflection exercise Reflect on own experience Personal adjustment today Preparation for role Motivation 23
Involving veteran parents in group education Qualifications are their experience and their listening ear Session is not about them Use their experience & support as it relates to parents participating and session topic FICare Australia/New Zealand 6 NICU s randomized 3 research/2 control 2 day workshop research implementation, nurses education parent education, small group work Veteran parent role Follow up Video conference with sitesteering committee meeting Communication +++ with site team Monthly teleconferences Teleconferences with veteran parents 24
Outcomes of the crct Primary outcome: Weight gain at 21 days since enrollment in the program (measured by the z score) Secondary outcomes; Weight gain velocity(d21 and birth to 36 weeks) Parent stress and anxiety Breastfeeding rate at hospital discharge Clinical outcomes: morbidity and mortality Safety (critical incidents) Resource use Intervention Sites Parents enrolled and orientated to their role in their infants care and the unit, role in rounds supported by the site study coordinator Parent education program in place Nurse education program (workshop/binders/education day/on line education) provided to > 90 % of nursing staff Unit policies and procedures support family integration and prolonged parental presence Opportunities created for peer to peer support Veteran parent volunteer training and support Preliminary Results Unpublished data to be presented 25
Steps to sustainability Engagement of others Communication Formalize and standardize the processes Training Measurement Sustainability beyond Health Quality Ontario: Implementing and sustaining changes Measurement Identify indicators of FICare and measure them Parent attendance at education sessions Parent presence and participation in rounds Use of staff communication tools(white board, skills checklist) Recording of parent presence/holding time Lessons Learned Do with what you have Always say Yes and. Project enabled by nurse and parent involvement and successful because of it Building resilience in families can have effects far beyond the NICU 26
FICare website resources Family Integrated Care Training Module ( FICare ) http://www.mountsinai.on.ca/education/patient and familyeducation/family integrated care training module ficare/familyintegrated care training module ficare Family Integrated Care (FICare) website http://familyintegratedcare.com/ References Implementing Family Integrated Care in the NICU: A Parent Education and Support Program, 2013 Vol. 13, (2) Implementing Family Integrated Care in the NICU: Engaging Veteran Parents in Program Design and Delivery, 2013 Vol. 13, (4) Implementing Family Integrated Care in the NICU: educating nurses, 2013 Vol.13, (6) Resources Nurses' perspectives on the close collaboration with parents training program in the NICU MCN Am J Matern Child Nurs. 2014 Jul Aug;39(4) Psychosocial program standards for NICU parents J Perinatol 35: S1 S4; 2015 27