Family-Centered Care in Childhood Disability: Theory, Research, Practice

Care for the Most Vulnerable: A Landscape of Opportunities
Contents
Part I: Theory
	1: Sensory Processing and Meaning-Making in Early Development
		1.1	 Introduction
		1.2	 The Importance of Sensitive Periods
		1.3	 Sensory Disorders in Preterm Infants and Children with ASD
		1.4	 Atypical Sensory Integration Throughout Different Developmental Stages
		1.5	 Summary
		References
	2: Collaborative Consultation with Families in the Context of Developmental Disability
		2.1	 Introduction
		2.2	 Mental Health Issues in Pregnancy, Infancy and Early Childhood
			2.2.1	 The Importance of Parental Well-Being and Self-Efficacy in Early Childhood Mental Health
			2.2.2	 Risk Factors in Pregnancy and Early Childhood
				2.2.2.1	 Difficulties During Pregnancy
				2.2.2.2	 Factors that Make the Birth and Delivery Period Difficult
				2.2.2.3	 Difficult Circumstances After Birth
			2.2.3	 Who Is the Child’s Expert?
			2.2.4	 Communication Strategies Around the Family
			2.2.5	 Mental Health of Professional Staff in the Perinatal Period
		2.3	 The Collaborative Consultation
			2.3.1	 Key Concepts of Collaborative Consultation
			2.3.2	 Observing the Baby, Sharing Observations with Parents
			2.3.3	 Levels of Infant Monitoring and the Interaction Between Levels
			2.3.4	 Observation and Consultation with Parents
				2.3.4.1	 Assess Whether the Parent Is Ready for the Joint Observation Situation
				2.3.4.2	 Always Ask for Permission!
				2.3.4.3	 Listen and Keep Quiet More, Say Less!
				2.3.4.4	 Wonder Out Loud!
				2.3.4.5	 Ask Open Questions!
				2.3.4.6	 Formulate Your Thoughts
		2.4	 Possible Specific Areas of the Use of Collaborative Consultation
			2.4.1	 Premature Babies
			2.4.2	 Infants Exposed to Substance Abuse or Ones with Neurological Impairment and Developmental Differences
			2.4.3	 Neurobehavioural Testing as a Consultation Field
			2.4.4	 Consultation During Pregnancy: Consultation Combined with Ultrasound Examination
		2.5	 Summary
		References
	3: A Meta-Theoretical and Multidimensional Guidance to Understand and Support Parenting in the Context of Child Disability: The Porridge-Like Framework
		3.1	 ABC: What Parents Do
		3.2	 Parenting as a Primary Source of Prevention for Children with Developmental Disabilities
		3.3	 Supporting Parents of Children with Developmental Disabilities
		3.4	 Finding a Way Through the Forest
		3.5	 ABC…D: The Porridge-Like Framework of Parenting
		3.6	 The Porridge-Like Framework on the Road
		3.7	 Ethical Implications of the Porridge-Like Framework of Parenting
		3.8	 Out of the Shilderwald
		References
Part II: Research
	4: When Eye-Contact Is Challenged: Understanding Early Interactions Between Low-Vision Infants and Their Parents
		4.1	 The Power of Parent-Infant Interaction
		4.2	 Visual Dimensions of Face-to-Face Interactions
		4.3	 Systematic Review
		4.4	 How Do Visually Impaired Children Engage in Early Interactions?
		4.5	 How Do Parental Interactive Behaviors Change in the Presence of Visual Impairment?
		4.6	 Implications for Research and Clinical Practice
		4.7	 Limitations and Future Directions
		4.8	 Insights from an Ongoing Research Study
			4.8.1	 Introduction and Aims
			4.8.2	 Participants
			4.8.3	 Methods
		4.9	 Preliminary Results and Future Directions
		4.10	 Conclusive Remarks
		References
	5: From the Early Detection to Early Intervention at Home: The Role of Technology in Infancy
		5.1	 Introduction: Technology in the Clinical Environment
			5.1.1	 Advances in Clinical Technology Development
			5.1.2	 Multidisciplinary Approach
			5.1.3	 Can Technology Help in Early Intervention?
			5.1.4	 Technology in Early Detection
		5.2	 Technology in Home Early Intervention
			5.2.1	 Technology as a Bridge from Home to Clinic
			5.2.2	 Research Applied to the Early Intervention
			5.2.3	 Development of the CareToy System
			5.2.4	 The CareToy Project
			5.2.5	 The CareToy System
				5.2.5.1	 Results of CareToy on Preterm
				5.2.5.2	 Further Development and Upgrade of the CareToy System
					CareToy in Infants with Down Syndrome
					CareToy-Revised (CT-R) for Infants with Brain Lesion
					The CT-R Project
		5.3	 Summary and Future Perspectives
		References
	6: Listening to Bodily Sensations: Subjective Experience of Embodied Sensitivity and Body-to-Body Interaction in Mothers of Children with Neurodevelopmental Disability
		6.1	 Introduction
		6.2	 Methods
			6.2.1	 Participants
			6.2.2	 Design
			6.2.3	 Interview Procedure
				6.2.3.1	 Semi-Structured Interview
				6.2.3.2	 Stimulated-Recall Interview
			6.2.4	 Setting and Procedure
			6.2.5	 Data Analysis
		6.3	 Results
			6.3.1	 Theme 1: Mother has No Access to Body Knowledge
				6.3.1.1	 Subtheme 1(a): Looking for External Knowledge Sources
				6.3.1.2	 Subtheme 1(b): Strategies to Regulate Infants’ Emotional State and Calm Them Down
				6.3.1.3	 Subtheme 1(c): Poor Access to Bodily Knowledge Causes Frustration and Insecurity
			6.3.2	 Theme 2: Situations When the Mother’s Body Expresses Emotional Meaning
				6.3.2.1	 Subtheme 2(a): Aspects Influencing Maternal Caring Style
				6.3.2.2	 Subtheme 2(b): Aspects Helping Mothers to Self-Regulate and Calm Down
				6.3.2.3	 Subtheme 2(c): Bodily Experience as Resource for Mother’s Well-Being
			6.3.3	 Theme 3: Observing as a Way to Enhance Bodily Awareness
				6.3.3.1	 Subtheme 3(a): Validation
				6.3.3.2	 Subtheme 3(b): Capacity to Establish Links Between Events
				6.3.3.3	 Subtheme 3(c): Self-Acceptance
			6.3.4	 Theme 4: The Body as “Problem”
				6.3.4.1	 Subtheme 4(a): Disability as Fragility of the Child’s Body
				6.3.4.2	 Subtheme 4(b): Disability as an Obstacle to Relational Fluidity
				6.3.4.3	 Subtheme 4(c): Disability as Ongoing Assessment of the Child’s Health
		6.4	 Discussion
		6.5	 Concluding Remarks and Looking Ahead
		References
Part III: Practice
	7: PICCOLO: Observing and Coaching Caregiver-Child Interaction to Support Early Development in Children With and Without Disabilities
		7.1	 PCI as a Context for Developmental Support
		7.2	 PCI Focus in Prevention and Intervention Services
		7.3	 Promoting PCI with Coaching
		7.4	 Observing PCI with the PICCOLO
		7.5	 Development of PICCOLO as an Observational PCI Measure
			7.5.1	 PICCOLO Measurement Development
			7.5.2	 Final PICCOLO Measure
		7.6	 Validating PICCOLO for Other Groups
			7.6.1	 Fathers
			7.6.2	 Group Caregivers
			7.6.3	 Children with Disabilities
			7.6.4	 Babies
			7.6.5	 Other Language Populations
		7.7	 Translating and Validating a PCI Measure in Spain
			7.7.1	 Inter-Rater Reliability for the Spanish PICCOLO
			7.7.2	 Validation Procedures for the Spanish PICCOLO
			7.7.3	 Factor Structure and Construct Reliability of the Spanish PICCOLO
			7.7.4	 Criterion Validity of the Spanish PICCOLO
		7.8	 Validating a PCI Measure with Children with Disabilities in Spain
			7.8.1	 Disability Sample Validation Procedures for the Spanish PICCOLO
			7.8.2	 Spanish PICCOLO Criterion-Related Validity in a Disability Sample
		7.9	 Uses of PICCOLO as an Observational PCI Measure in Research
			7.9.1	 Evaluations of PCI Interventions
		7.10	 Use of PICCOLO as an Intervention Tool
			7.10.1	 A Practical Process for Using PICCOLO
			7.10.2	 PICCOLO in Home Visiting
			7.10.3	 PICCOLO in Parent Training
		7.11	 Evaluation of PICCOLO as an Intervention Tool
			7.11.1	 PICCOLO as an Intervention Tool in the U.S.
			7.11.2	 PICCOLO as an Intervention Tool in Spain
		7.12	 Considerations for Training Practitioners to Use PICCOLO
			7.12.1	 Lessons Learned
		7.13	 PICCOLO in a Community of Practice
		7.14	 Summary
		References
	8: Early Intervention in Cerebral Palsy: From Theory to Current Practice
		8.1	 Introduction
		8.2	 The “Why” of Early Intervention: Leveraging on Early Experience-Dependent Neuroplasticity
			8.2.1	 Experience-Dependent Neuroplasticity
			8.2.2	 When Neuroplasticity Is “Maladaptive”
			8.2.3	 Neuroplasticity and Cerebral Learning: The Example of Motor Learning
		8.3	 The “Who” of Early Intervention: Targeting the Infant as Part of a Wider Social Constellation
			8.3.1	 Family-Centered Care for Children with Special Needs
			8.3.2	 Parent Well-Being and Parental Engagement as Part of EI
			8.3.3	 Mental Health and Well-Being in Parents of Children with or at High Risk of Cerebral Palsy
		8.4	 The “What” of Early Intervention: Environmental Enrichment as the Core Strategy to Promote Development
			8.4.1	 The Environmental Enrichment Paradigm
			8.4.2	 Sensory Environmental Enrichment
		8.5	 The “Where” of Early Intervention: The Shared Space of Carer-Infant Intersubjectivity
			8.5.1	 Early Intersubjectivity: An Opportunity for Early Intervention
			8.5.2	 Early Intersubjectivity in Early-Life Adverse Conditions
			8.5.3	 Early Intersubjectivity: The Specific Case of Cerebral Palsy and Neurodevelopmental Disorders
		8.6	 Current Evidence-Based Family-Centered Early Interventions in Infants with or at High Risk of Cerebral Palsy
			8.6.1	 Early Intervention in the Neonatal Intensive Care Unit (NICU)
			8.6.2	 Early Intervention After NICU Discharge in Infants with or at High Risk of Cerebral Palsy
				8.6.2.1	 Summary of the Interventions
		8.7	 Final Considerations
		References
	9: Video-Feedback Interventions to Support Parents of Children with Neurodevelopmental Disabilities
		9.1	 The Neurodevelopmental Disabilities’ Impact on Parenting Practices
		9.2	 The Use of Video-Feedback Interventions in Supporting Parenting
		9.3	 A Systematic Review of Video-Feedback Interventions with Parents of Children with Neurodevelopmental Disabilities
		9.4	 VFIs Approaches Used in Previous Studies
		9.5	 Effects on Children’s and Parent’s Outcome
		9.6	 Limitations of Previous Studies
		9.7	 Opportunities Created by the COVID-19 Pandemic in Pediatric Telecare
		9.8	 Insights from an Ongoing Italian Family-Centered Telecare VFI: The SPHERE Project
			9.8.1	 Main Aims
			9.8.2	 Study Design
			9.8.3	 Study Population
		9.9	 The Telecare Video-Feedback Intervention
		9.10	 The Alternative Intervention
		9.11	 Remote Assessment: Challenges and Adaptations
			9.11.1	 Online Questionnaire
			9.11.2	 Video Recording
			9.11.3	 Behavioral Coding
		9.12	 Expected Results and Implication for Clinical Practice
		9.13	 Conclusive Remarks
		References
	10: Assessment and Intervention Potentials of the Face-to-Face Still-Face (FFSF) Paradigm in Developmental Clinical Settings
		10.1	 Why Is the FFSF Procedure a Privileged Observation Viewpoint?
		10.2	 Interactive Regulation Problems in Dyads of Children with Disability Conditions
		10.3	 Promoting Development by Investing on Parent-Child Interaction
		10.4	 Using the FFSF in Clinical Practice: Methodological Notes
		10.5	 Using the FFSF in Clinical Practice: Socio-Emotional and Socio-Cognitive Assessment
		10.6	 Using the FFSF in Clinical Practice: Supporting Parenting and Parent-Child Interaction
		10.7	 Clinical Vignettes
		10.8	 Conclusive Remarks
		References