involvingparents no images The Centre for Emotional by mikesanye


									Involving parents with
decision making in the
neonatal unit

Ryan Watkins
Consultant Neonatologist
Clinical Director for Women and Children
Involving parents
•   Local service configuration
•   Context of prematurity
•   The start of life
•   Life in intensive care
•   Life after discharge
•   Summary

           obstetrics                        SCBU
                                            ANNP led       4 consultants
                deliveries                     249          54 midwives
6 consultants
110 midwives
                       NICU          SCBU

 RSCH                        Neonatal
The context of prematurity
The context of prematurity
The context of prematurity
The context of prematurity
The context of prematurity
At the start of life
•   Nuffield Council guidelines
•   Coordinated advice
•   No legal obligation to sustain life
•   Withholding vs withdrawing
At the start of life
    Gestation (wks)   guidance
    <22               Start intensive care only as
                      part of a study

    22-22+6           Start intensive care only in
                      exceptional circumstances

    23-23+6           Consider parent’s wishes but
                      no obligation to start intensive

    24-24+6           Start intensive care unless
                      condition poor

    >25               Start intensive care
Local practice
•   Antenatal surgical clinic
•   Antenatal counselling
•   National data
•   Local data
•   Document decisions
The NICU journey
• Prevalence of depression and anxiety in
  mothers of preterm infants
• Negative impact on child’s cognitive,
  emotional and behavioural development

Swartz, MK 2005
The NICU journey
•   Adapting to risk
•   Protecting fragility
•   Preserving family
•   Compensating for the past
•   Cautiously affirming the future

Swartz, MK 2005
The NICU journey
• Grief process
   – Shock, denial, anger, guilt, acceptance, adjustment

• Reactions
   – Research, control, support, escape

• Limiting stress
   – Visiting, noise, lighting, accommodation, access, communication,
     counselling, information, peer support

Fowlie, PW 2004
The NICU journey
• Lazarus cognitive appraisal model
   – Primary appraisal assesses challenge
   – Secondary appraisal evaluates coping
     resources for dealing with the demand
• Lazarus coping model
   – Problem focused
   – Emotion focused

Law and Morse 2001
The NICU journey
• Gender differences
   – In seeking support and sources of support
   – Mothers look to spouse
   – Fathers look to staff

Law and Morse 2001
The NICU journey
• NICU strategy
   – Attention to parent skill
   – Attention to parent control

   – Reduce helplessness
   – Increase confidence
   – Increase self-esteem
   – Reduce anxiety
Law and Morse 2001
The NICU journey
• Parent Baby Interaction Programme
    – Weekly 1hr sessions
    – Enhance parent observation and sensitivity

• Outcomes
    –   PSI
    –   NAPI
    –   NCATS
    –   Home

Glazebrook, C et al
The NICU journey
    • No improvement in outcomes
    • High stress in 25% parents
    • HOME scores low in communication and
      emotional reinforcement
    • NCATS scores low in engagement with
      teaching infants

Glazebrook, C et al
The NICU journey
   • NIDCAP (Als 1990)
        • Infant behaviour observation
            • Autonomic, motor, state organisation, attention
   • RCT
            • Standard vs Basic Devpt Care vs NIDCAP
   • Outcome
            • No difference in parent confidence, perception of nursing
              support or parental stress

Van der Pal 2007
The NICU journey
• Video assessment of parent-infant
   – Ability to appraise infant behaviour
   – Apply appraisal to action
   – Improved competence with NCAFS and APIB

Lawhon, G 2003
The NICU journey
• End of life decisions
  – Duty of care to child and parents
  – Importance of effective communication
  – Resolve disagreement by consensus
  – Duty not to provide life sustaining treatment
    where inappropriate
The NICU journey
• RCPCH guidance
  – Brain death
  – PVS
  – No chance
  – No purpose
  – Unbearable
Local practice
 – Newborn individualised developmental care
   and assessment programme
 – Individualised, developmentally supportive
   and family centred care
Local practice
•   Open visiting
•   Regular communication
•   Clear and consistent information
•   Access to charts and notes
•   Support and counselling
•   Peer support
•   Physical assistance
•   Financial assistance
Local practice
• Parent involvement in care
  –   Routine care
  –   Timing of interactions
  –   Kangaroo care
  –   Quiet time
  –   Advanced care
Planning for home
• Conversion from medical care to parenting
• Long delay between birth and meaningful feedback from
  infant limits development of parent – infant intimacy
• Parent acceptance and adjustment predicts stress and
  post-discharge functioning
• Don’t forget the father

Bakewell-Sachs 2004
Planning for home
• APIP – home-based education intervention programme
   – RCT - <33 weeks
        • Portage (developmental education programme)
        • Parent adviser (social support intervention)
        • Standard care

   – Outcomes at 2y for Griffiths
   – Outcomes at 5y for BAS, Movt ABC, CBC

Johnson S et al 1998 and 2005
Planning for home
• Outcomes
   – Preterm infants showed poorer cognitive
     performance than their term peers
   – No significant difference between preterm
     infants in 3 groups

   – No advantage at 5y of intervention

Johnson S et al 1998 and 2005
Planning for home
• Discharge intervention programmes
   – HV coordinator
   – Topic group teaching
   – Discharge consultation
   – Parent evenings
   – Written material

Broedsgaard, Wagner 2005
Local practice
• Discharge planning
  – Skills
  – Resuscitation
  – HV liaison
  – Rooming-in
Local practice
•   Parent Forum
•   Parent feedback
•   Parent complaints
•   Parent support groups
•   Parent charitable support
Local practice development
• Community Neonatal Support
• Primary care liaison
Involving parents
•   Local service configuration
•   Context of prematurity
•   The start of life
•   Life in intensive care
•   Life after discharge

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