Family Centred Intervention and Early Diagnosis

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Top Contributors - Robin Tacchetti, Robin Leigh Tacchetti, Jess Bell, Kim Jackson, Naomi O'Reilly, Tarina van der Stockt and Ewa Jaraczewska  

Early Intervention

Early intervention services are a federal program that supports and provides resources for families of special needs infants and toddlers 0-3 years old. Children with developmental disabilities are entitled to various services including

• PT
• OT
• Speech
• Vision
• Nursing
• Assistive Technology
• Special Education

Evaluations and follow up care is provided in the childs least restrictive or natural environment, typically at home or daycare centre. (TOMASELLO) Traditionally, early intervention has worked off an expert model where the therapist created goals and provided follow up care based on the impairment. Any interventions provided by the family was in adjunct to the healthcare provider. The overall care and decision making for the child was in the hands of the therapist. This model is referred to as a rehabilitation model. (DELMAU)

Family-Centred Care

Over the past decade, there has been a shift from the therapist-driven model to a family education/empowerment model. Research has shown early intervention is more effective when it has the following components:

• Family-centred
• Collaborative effort between family and therapists
• Within the child's natural environment

(SPEAKER)

Family-centred care (FCC) transfers from the role of planning and goal setting from the therapist to the family. The therapist works as a “coach” to help families identify needs, goals and solutions.  

The FCS model has specific roles for clinicians and families:

Clinicians:

• provide coaching and education to increase knowledge and impart support for parents and caregivers.
• support parents and caregivers to build parental capacity and expertise, prioritizing a positive parent-child relationship

Families:

• Parents’ goals and aspirations must be central to the intervention
• Parent participation is important to support the need for the frequent practice of activities that lead to skilled movement and functional independence (speaker)

When families are involved in the care and decisions of their child, the family and the child reap better outcomes. (DELMAU)

Solution Focused Coaching

Traditionally, early intervention was problem-oriented with a focus on identifying impairments in the body. Interventions were targeted at fixing the dysfunction and decisions about care were solely made by the therapist. Contrastly, in solution focused coaching (SFC) the therapist and family work together utilizing the child’s strengths to envision possibilities and seek solutions to meet the family's needs and targeted goals.(Baldwin, speaker). With SFC, three key factors are important:

• Therapists coach families toward the creation of goals and envisioned future
• Family empowerment is a priority
• Use of infants strengths and abilities versus problems for goal setting (SPEAKER)

Cerebral Palsy

The most common physical disability in childhood is cerebral palsy (CP) and occurs for every 1 in 500 births. CP is caused by brain injury early in development and presents with disorders in posture and movement leading to activity limitation. Traditionally, a diagnosis would be concluded between 12 and 24 months of age when symptoms were evident. New research, however, reveals that signs and symptoms of CP appear and develop before 2 years of age. Using a combination of medical history, neuroimaging and standardized motor and neurological assessments for infants under 2, the risk of cerebral palsy can be now be predicted. The tools below are commonly used for infants under 2 to estimate the risk of a cerebral palsy diagnosis.

Hammersmith Infant Neurological Examination

The Hammersmith Infant Neurological Examination (HINE) has shown high sensitivity in detecting CP in infants, (98% in infants under 5 months old, 90% in infants over 5 months old. This free tool with good interobserver reliability is typically utilized on infants between 3 and 24 months. Neurological function is tested with 26 different criteria based on movements, behaviour, cranial nerve function, protective reactions, reflexes and gross and fine motor function. Test results not only identify children at risk but detail the severity and type of motor impairment. Having this specific information allows early intervention to be targeted to the specific neurological sequelae.

Gross Motor Function Classification System

The Gross Motor Function Classification System (GMFCS) tool classifies children under 2 into 5 distinct levels depending on the movement that is self-initiated accenting mobility, transfers and sitting. These criteria relate to functional limitations for the child versus quality of movement.

Gross Motor Function Classification System – Expanded and Revised (GMFCS – E & R)

• LEVEL I: Infants move in and out of sitting and floor sit with both hands free to manipulate objects. Infants crawl on hands and knees, pull to stand and take steps holding on to furniture. Infants walk between 18 months and 2 years of age without the need for any assistive mobility device.
• LEVEL II: Infants maintain floor sitting but may need to use their hands for support to maintain balance. Infants creep on their stomach or crawl on hands and knees. Infants may pull to stand and take steps holding on to furniture.
• LEVEL III: Infants maintain floor sitting when the low back is supported. Infants roll and creep forward on their stomachs.
• LEVEL IV: Infants have head control but trunk support is required for floor sitting. Infants can roll to supine and may roll to prone.
• LEVEL V: Physical impairments limit voluntary control of movement. Infants are unable to maintain antigravity head and trunk postures in prone and sitting. Infants require adult assistance to roll.

*** Less favorable outcomes are noted in low and middle income countries with over 73% of children classified as GMFCS level of III-IV.

The Prechtl General Movement Assessment

The Prechtl General Movement Assessment

r. Clinicians should understand the importance of prompt referral to diagnostic-specific early intervention to optimize infant motor and cognitive plasticity, prevent secondary complications and enhance caregiver well-being.

Early, Accurate Diagnosis and Early Intervention in Cerebral Palsy: Advances in Diagnosis and Treatment. J Novak et al (2017). AMA pediatrics, 2017 171(9), 897–907.

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