In memoriam Zack Boukydis, PhD, Professor in Psychology, 1948-2015 ”Zack had a unique gift to make you feel that you are special, as a parent, as a baby, as a nurse, always encouraging and believing in you." "Zack taught me to look for the wisdom hidden in everyone of us, including Myself.”
Promoting parental participation to the care of their hospitalized newborn infant – The Close Collaboration with Parents™ Intervention Främjande av föräldrarnas deltagande i vården av deras nyfödda barn under sjukhus vistelsen – Nära samarbete med föräldrar ™ intervention NFSU 25 years jubilee conference in Oslo, 10 of March, 2016 Sari Ahlqvist-Björkroth, LPsy, Psychologist
Early separation in the context of a birth of premature or sick infant In Nordic countries, about 11% of newborn infants are hospitalized and need neonatal care each year. • Infections, low blood sugar, low bilirubin • Prematurity, hard diseases, syndromes or malformations
The need of a newborn for medical examination, observation or treatment may lead to early separation between infant and parents or exclusion of parent from their role as primary caregivers of their infant. The care practices and staff-parent communication immediately after birth and during infant’s hospitalization play key role enabling or preventing parental participation, care and close proximity between parents and infant.
CONSEQUENCES OF EARLY PARENT-INFANT SEPARATION
Context of early bonding from infant’s perspective Evolution has led children to become biologically preprogrammed to form attachments to their caregiver Learning to identify the caregiver in the utero • Newborn infant is attracted to the mother’s voice and smell • The first sign of the infant’s attachment and bonding to the mother
Existence of an early sensitive period in humans during which the mother and baby have an optimal chance to bond Early life attachment has at least two functions: to keep the baby in the proximity of the mother and to guide brain development.
Sullivan R, 2011
Consequences of early separation for the infant Mata-analysis comparing skin-to-skin care to conventional care of LBW infants found that skin-to-skin care: •Was associated with 36% lower mortality •Decreased risk of neonatal sepsis, hypothermia, hypoglycemia, and hospital readmission •Increased exclusive breastfeeding. •During skin-to-skin care newborns had lower mean respiratory rate and pain measures, and higher oxygen saturation, temperature, and head circumference growth.
Skin-to-skin contact or suckling during the first hours postpartum improve infants’ self-regulation, mothers sensitivity and dyadic mutuality and reciprocity at the age of one year. Swaddling right after birth restricted both the physical and the emotional early interaction between the mother and her infant -> lack of mutuality at the age of one year. Boundy EO et al., 2016; Bystrova et al, 2009;
Arch Dis Child Adolesc 2004
Mother's birth experience has longlasting effects on preterm infant
Latva R, Early Human Development, 2008
Context of early bonding from parental perspective 1.
Close parent-infant proximity (nursing, grooming, touching) activation of the neurobiological attachment system
2.
Preoccupation with infant safety (protect the infant) •
•
3.
“Primary maternal preoccupation” - obsessive-like involvement with thought, compulsive checking and an exclusive mental focus on the infant. Stay close to the infant activation of care giving system
From unique and selective emotional bond to the infant – repetitive behavior and representations.
Motherhood constellation of a mother of hospitalized newborn 1.
Who is responsible for the maintenance of the life and growth of my baby? (someone else or me)
2.
Do I dare to emotionally engage with my baby now, if he or she does not survive?
3.
Am I as a mother sufficient (compared to professionals) to provide environment that will support the growth of my baby?” “Can I be part of providing my child an environment that will support his or her growth?
4.
Can I transform my own identity to facilitate the functions mentioned above?”
Stern, 1995
Consequences of early separation for the parents Unexpected termination of pregnancy – interrupted psychological process of pregnancy
Mothers’ experiences of having their newborn infant in a NICU • During separation mothers’ felt “not being a mother” • Did not experienced that the infant was theirs until they had time alone with infant in the unit or where discharged
Participation to the care is a core, when mother is seen as a part of care team she feels herself as a mother. • Felt insufficiency when they could not take care of their infant themselves • They are experts, I am not needed feeling unwanted • Listening a unique parent and involving her or him in the care
Wigert et al., 2006
Consequences of early separation for the parents A study on attachment progress from the mother-to-child – a bonding 1. 2. 3.
Proximity – medium-high preoccupation thoughts and worries Initial separation – increased preoccupation Prolonged separation whit potential loss – significantly decreased preoccupation
In the conditions of prolonged separation with potential conditions of loss the separation anxiety turns into diminished reactivity characteristic of loss turns into depression.
Feldman et al., 1999
Parental psychological problems are common after long-term hospitalization of prematurely born infant Preterm birth of the infant is an independent risk factor for parental PPD (postpartum depression) • Parents of very low birth weight (VLBW) infants has 3-18 times
higher risk of PPD than parents of full-term infants (FT). • Parents of extremely low birth weight infants had prevalence 31% of PPD, VLBW 15% of PPD and FT 3.8% PPD. •Mothers PPD was associated with with length of hospital stay, infant health condition and neurological status.
Helle et al., 2015; Agostini et al., 2014; Segre et al., 2014;
Parental mental well-being is associated to child’s subsequent development • Prolonged parental psychological ill-being was associated to poor developmental outcomes of VLBW infants.
• Maternal PPD was related to less optimal mother-preterm infant interaction, whereas VLBW alone was not. • The associations are most likely complex, multidirectional and timedependent.
• The precursors of suboptimal development may lie in the early pre- and postnatal period. • Initiation of a transactional process: high risk vulnerable infant and unprepared parents in threatening situation feeling anxiety, loss of control, alteration from parenting role, separation form newborn infant and fear for the survival of the infant.
Huhtala Mira, PIPARI –study, 11/2015 Annales universitatis Turkuensis; Korja et al., 2008
Interventions supporting parenting have shown to be beneficial for •
Psychological well-being of the parents with less stress, depression, and anxiety
•
Neurobehavioral and cognitive development of the child • NNNS, Bayley, CBCL, M-CHAT
•
Less intensive care days and shorter length of stay in a hospital
New hospital architecture with single-family rooms is beneficial •
Psychological well-being of the parents with less stress and depression
•
Growth of the child
•
Neurobehavioral and cognitive development of the child
•
Shorter length of stay in a hospital
•
Better work satisfaction of the staff
•
Recent studies have shown that parental presence, developmental care, and increased breastfeeding have been the mediators for child better developmental outcomes.
Key components of effective interventions supporting parenthood? 1. Includes parental support 2. Focuses on parent-infant relationship 3. Includes parents actively 4. Includes possibility to go trough the story of becoming a parent for this baby
5. Starts early, during hospitalization
Benzies et al., 2013; 2014; Brecht et al., 2012; Herd et al. 2014
International Closeness Survey in the SCENE 11 centers in 6 European countries Finland (1) Sweden (3) Estonia (2) Italy (1) Spain (1) Norway (3) http://www.utu.fi/en/sites/scene/Pages/home.aspx
Close Collaboration with Parents Training Program A systematic training package. A preventive intervention. The goal is to improve practices that supports parenthood, bonding, and presence of the parents in a neonatal unit.
Whole multidisciplinary staff of a unit is trained to collaborate with parents during the hospital stay of the baby. Training is based on assumption that parental care and an emerging relationship with the parents are crucial for the development of newborn infant. Parents developing emotional bond to the infant is strengthen by the closeness and participation.
The program was developed at Turku University Hospital 2009-2012 Zack Boukydis, PhD, Professor in Psychology Sari Ahlqvist-Björkroth, LPsy, Psychoterapist
Liisa Lehtonen, MD, Professor in Pediatrics Anna Axelin, RN, Researcher, Dosent The NICU of Turku University Hospital
http://www.vsshp.fi/en/toimipaikat/tyks/to8/to8b/vvm/Pages/default.aspx
The goals of the training program are 1) To improve staff’s skills to observe of infant's individual behavior with parents and plan the infant care with parents based on the join observations. 2) To supports the staff in their capacity to listen parents regarding decision making and thereby integrate parents in the care team. 3) To increases parents' presence and participation in the care of the infant. 4) To support infant development and attachment relationship between parents and the infant. 5) To prepare a unit for the transition to single-family room unit.
Phase I Observing Infant Behavior Theory: The theoretical basis for the observation is derived from an understanding of the organization of infant behavior; NNNS, NBAS, APIB. Staff: To expand the staff capacity to see infant’s individual features and to communicate the observations to parents and colleagues Infant: Individuality and sensitivity of care
Phase II Watching Babies with Parents Theory: Active listening. A quiet, attentive “space,” to support parents’ own intuitive, biologically based knowing about their own babies. Staff: Capacity to listen to parents’ perceptions and to give psychological space for parents in order to strengthen parents’ voices and to create a common base for care recommendation. Infant: Continuity of care and increased parental closeness Parent: Feeling welcome in the unit, being heard and respected as a parent, and resuming ownership of the baby. Participating in care and decisions regarding care. Increasing physical and emotional closeness
Listening to Parents: Helping parents listen to themselves – to remove barriers to attachment •
Help parents to hear themselves [verbally, and on all levels of awareness]
•
Help parents develop ‘own’ meaning.
•
Tap into (recover) intuitive sources of knowing
•
Helping parents to stay on position of not knowing
•
Biological bases of parenting: self-correcting behavior – wired into infants and the parent-infant relationship
•
Empathize with parent; they can empathize with themselves and their infant.
Why Listen? • Change rigid perceptions (about self, about interaction with infant, about infant) • Change ‘patterned’ (structure bound) reactions.
• Change self-critical reactions (self limiting).
Watching Babies with Parents • Listen: provide ‘quiet; watchful times’ where you and parent are watching their baby (notice your own feelings; listen to yourself) • When parent comments; ask open ended questions; for example: “Can you tell me more (about what you just said)”? [not “why did you say that?”] • Wonder out loud about baby’s behavior; “I wonder what she is trying to tell us now?”.
•
Ask ‘open-ended’, curious questions about the baby’s behavior; “She is putting her hand next to her mouth, how do you think that is for her (what do you think she is telling you)?”
Watching Babies with Parents: Wondering out loud • Add ‘wondering’ to your comments: Example: “He was arching his back, he looked uncomfortable, then he put his fist in his mouth; --I wonder how that was for him?” • Rather than: “Babies like to put their fist in their mouth in order to calm down.”
Watching Babies with Parents: Ask open-ended questions • Ask ‘open-ended’, curious questions; “She seemed to open her eyes more when you came close to her isolette and said hi to her –”what do you think was going on for her”? • When you will be commenting, sharing your observations a) Ask parent what she/he sees i.e. “What does she seem to be doing now?” b) Comment on baby’s behavior and ask parent what she/he thinks this may have meant for her baby.
Watching Babies with Parents Commenting and comparing • Professional role must be understated, when ‘sharing’ the observing/wondering role with the parent. • Let the parent ‘take the lead’ in talking about their baby’s personality, feelings, and and what baby is doing and their own feelings about their baby. (Say less Listen more). • Share your own observations; compare your observations with parent’s comments/ observations; suggest continue to watch baby. • Consider summarizing a ‘watching together’ session by completing the See Me Develop form - parent and you contribute to comments on the form.
Phase III Understanding Individual Characteristics of Parents and Families Theory: Differences in parents and their possible responsiveness with their infant. A modified version of a interview, the Clinical Interview for Parents of High-Risk Infants [CLIP-Initial]. Staff: Capacity to see families’ individual features and to get to know families better in order to create partnership, including collaborative decision-making Family: Parents are able to more openly express their hopes for infant care, and the way they are participating in care is respected. Parents become experts of their infant care. Parent–infant relationship is strengthening.
Phase IV Family centered transition from hospital to home Theory: Collaborative decision making so that both the staff and the parents have an equal opportunity to contribute to the decisions that are made. Staff: Capacity to integrate parents in the care from the beginning and increase it toward the discharge. Discharge is planned together with parents. Family: Parents know their infant and feel confident in going home. Infant knows her or his parents and feels secure with them.
Neonatal care as a partnership between healthcare professionals and the family
Care culture
Care practices
Attitudes
Staff has the control of infant care
Staff deices how parents can participate to the control of care
Shared control of the infant care
What is known about promoting culture change? A facilitated systematic training process with clear goals Experiential learning is described as a learning cycle including concrete experiences, new understanding, active exploration and new applications Facilitation is required to help people change their attitudes, habits, skills, ways of thinking, and working. Continuous interaction between individuals, evidence, and context to achieve and sustain the new practice.
Rycroft-Malone et al., 2013; Manley K, McCormack B, Wilson V., 2008; Kitson, Harvey, McCormack, 1998; Klob, 1984;
The elements in the training program that support the change of the care culture 1.
Active decision making and commitment of the staff and the leadership of a participating unit
2.
The training is targeted to the whole multiprofessional staff of a unit
3.
Training program involves a process: a) Including four theoretical phases where each of the phase is built on the previous one b) Bed-side practicing with individual mentor c) Reflection in a group supervision
4.
Experiential learning in authentic work environment
The whole staff of a unit is trained • the staff can be trained in two or several groups • train the trainer -method
Experiential learning is a key learning method in the program 1) Bedside practice with mentors The role of mentors, as empathetic and respectful learning partners, was central in enabling the individual trainees to become aware of their existing care practices and to explore new ways of working with infants and families. 2) Reflective group discussions about learning experiences The staff experienced being heard and understood increased their own ability to listen and accept different perspectives (infant – parent – staff) in the collaborative care and decision making with parents. Facilitated internalized understanding and new applications of the new knowledge. Heffron & Murch, 2011; Kitson ym., 1998
Close Collaboration with ParentsTM in Finland
Turku University Hospital
The study protocols to evaluate the training program 1. 11-year trends of care practices 2. Nurses’ perspective on care practice changes 3. Prospective follow-up of child, family and staff outcomes 4. Effects on parental involvement in the infant care in a
national study
Nurses’ Perspective on Effects of Close Collaboration with Parents Training Program: A Qualitative Study Axelin A et al. Am J Maternal/Child Nursing, 2014, 39(4)
• To describe nurses’ experiences of the training program and its influence on their care practices • 22 nurses (half of the nursing staff)
• 8 group interviews in 2011
Reformation of staff's and parents'roles
Concern about regression to past practices
• Thematic analysis (Braun & Clarke 2006): 5 overarching themes http://journals.lww.com/mcnjournal/Abstract/2014/07000 /Nurses__Perspectives_on_the_Close_Collaboration.9.aspx
Training program promoting change toward FCC
Benefits to families and staff
Improved support for parent involvement
On-going, prospective follow-up of child, family and staff outcomes • To evaluate the effects of the program on parents’ stress, depression, and bonding to the infant • Including infants born below 34 GA (mean 29 weeks) • Parental outcomes at 7±3 days after admission, at discharge, and at 6 months (only EPDS) • Depression: Edinburgh Postnatal Depression Scale (EPDS) (Cox 1987) • Parents’ stress in NICU: Parental Stressor Scale: neonatal intensive care unit (PSS:NICU) (Miles et al. 1993) • Bonding: Baby and You (Furman & O'Riordan 2006) • Study participants in chorts: • 2001-2006: 153 • 2011-2013: 188
Mothers’ depression decreased •Mothers with scores >12 at 4 to 6 months of CA in 2001-2006: 9.4% in 2011-2013: 3.6% •Mothers’ mean EPDS score in 2001-2006: 6.3 in 2011-2013: 5.3 adjusted 1.3 points lower, p10 at 4 to 6 months of CA in 2011-2013 2.4% mean EPDS score 1.5
Preliminary results on parental stress, depression, and bonding • Parental total stress was low at 7 days and discharge • PSS:NICU scores: Mothers 1.89 (0.52)/ Fathers 1.69 (0.72), scale 1 (not stressful) – 5 (extremely stressful)
• Main sources of stress for parents were • Separation • Noise, monitors and equipment • Infant pain
• Aspects of bonding • • • •
Parental worry decreased during hospitalization, p
