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Implementation of COPCA

Akhbari-Ziegler, Schirin

DOI:

10.33612/diss.132156787

IMPORTANT NOTE: You are advised to consult the publisher's version (publisher's PDF) if you wish to cite from it. Please check the document version below.

Document Version

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Publication date: 2020

Link to publication in University of Groningen/UMCG research database

Citation for published version (APA):

Akhbari-Ziegler, S. (2020). Implementation of COPCA: A family-centred early intervention programme in infant physiotherapy. University of Groningen. https://doi.org/10.33612/diss.132156787

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General introduction

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INTRODUCTION

The focus of this thesis is on early childhood intervention in paediatric physiotherapy for infants at risk of developmental motor disorders or diagnosed with a developmental motor disorder or delayed motor development and their families.

Early childhood intervention in general is an umbrella term for systems, services, and support aimed to improve the development, well-being and participation of infants and young children with special needs and to support their families during the early years. Examples of special needs may include abuse, neglect, socio-economic burdens, developmental delays or disabilities in different areas of development.1 The types of

services that are provided are manifold, e.g. medical, nursing, nutrition, psychological, vision or social work services, but also occupational therapy, physiotherapy or speech therapy. In the field of developmental delays or disabilities the child related focus of early intervention is on physical-, cognitive-, communication-, self-help or adaptive and social- or emotional skills.2 In paediatric physiotherapy the child related focus is

primarily motor development.

This thesis is about early physiotherapeutic intervention in infants with or at risk of developmental motor disorders. Principles in early physiotherapeutic intervention in infants differ from intervention in older children as (1) the infants generally are at risk of developmental motor disorders but do not have a diagnosis yet and (2) they are in a very early stage of development, indicating that they are in the initial phases of the acquisition of basic movement skills. Therefore, I first briefly summarise theories on motor development, which guided actions of paediatric physiotherapists over the years (paragraph 1). In paragraph 2, I describe what the umbrella term ‘developmental motor disorder’ covers. Paragraph 3 addresses the different early intervention programmes applied in infant-physiotherapy and the evidence on their effectiveness. In the recent years, some new and promising programmes have been developed, e.g. the “Goal, Activity, Motor Enrichment” (GAME) programme3 and “Baby-CIMT”4. In my description

I focus on the “Bobath Concept” or “NDT approach”5 and on “COPing with and CAring

for infants with special needs” (COPCA)6 a family-centred, physiotherapeutic, early

intervention programme, as they form the core of this thesis. The NDT approach is worldwide the most frequently used approach for the therapeutic management and treatment of infants at risk of developmental motor disorder.5 Over the years it

underwent many changes. To understand how the method is applied nowadays, it is important to know the historical development of this approach. Finally, in paragraph 4 the aims and the outline of the thesis are presented.

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THEORIES ON MOTOR DEVELOPMENT

Theories on motor development, which, since the beginning of early intervention, guided actions of physiotherapists, largely changed during the last century. The Neuromaturational Theory (NMT) of motor development of Gesell et al.7 and the

model of hierarchical organisation of the nervous system were the dominant theories in the 1940s and 1950s. Consequently, in NMT motor development was seen as linear, genetically determined proceeding, organised hierarchically and primarily determined by maturation processes of the nervous system. The continuous motor development was seen as a chronologically strongly determined process, and as a result of an increasing control of higher cortical centres over lower neuronal structures. It included the recognition of general developmental rules in the sequence of development. Variability and inconsistency were considered as deviations from the norm. Only a minimal role was attributed to environmental experiences in the process of motor development.

In the 1980s and 1990s two new theories, the Dynamic System Theory (DST)8 and

the Neuronal Group Selection Theory (NGST)9,10,11 became important in the guidance of

therapeutic actions, because they appreciated experience and environmental factors as important elements in motor development. Both, the DST and the NGST, acknowledged variation as an inherent characteristic of motor development, but relative to the influence of genetic factors, they differed.9 Genetic factors play a minor role in the DST,

whereas NGST honours genetic configuration, epigenetic processes and experience as equally important.

NGST describes variation and the development of adaptive behaviour as representative for typical motor development. Variation denotes a rich genetically determined repertoire of strategies for movement functions. In addition, NGST distinguishes two different phases of development, primary and secondary variability. In the phase of primary variability, infants show manifold movement variations, but the movements are adapted to environment only to a marginal extent.9 In the phase

of secondary variability, the infant gradually develops the ability to adapt his/her movements to the environment, in a task specific manner. The start of the secondary phase is at function-specific ages, indicating earlier for reaching and grasping than for walking. The ability to select from the given movement repertoire the best fitting strategy for a specific task (adaptability), develops through active trial-and-error experiences and the associated sensory information. Hence, self-produced sensorimotor experiences are fundamentally important for motor development.9 Consequentially, a

reduced variation (a limited repertoire of motor strategies) and a reduced adaptability are characteristics of atypical motor development. According to NGST, children with an early lesion of the brain have both deficits: a limited repertoire and a limited

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adaptability. The limited adaptability is caused by deficits in self-produced sensorimotor experiences as a consequence of the limited repertoire and by impairments in using various sensory informations.11 Due to the limitations of the repertoire, the typically

available and best task specific strategy may not exist. This implies that an infant with an atypical development has to search for an alternative solution, different from the solution of a typically developing infant. According to Dirks and colleagues (2011): “Probably this solution is the infant’s best achievable and should be appreciated and not regarded as to be ‘treated away’”.6 Due to impaired sensory processing, an infant

with atypical development due to an early lesion of the brain, needs about ten times more trial-and-error experiences than a typically developing infant to find an alternative movement strategy.9

The implementation of the NGST into practice may guide actions of physiotherapist to support infants in their motor learning process. Motor learning is a process of acquiring the capability for skilled motor actions, which results from experience or practice. Motor learning involves learning new strategies for sensing and moving.12

Infants are in the phase of the acquisition of basic movement skills. They acquire movement skills through associative and procedural learning, two forms of implicit learning. Associative learning occurs especially through trial-and-error learning, procedural learning through repetition of movements in varying conditions.12 Motor

learning results from the interaction of the infant with a specific motor skill in the environment. The active and dynamic exploration of the environment through self-produced motor behaviour and trial-and-error experiences may increase variation and adaptability of an infant at risk of developmental motor disorder.

DEVELOPMENTAL MOTOR DISORDERS

‘Developmental motor disorder’ is an umbrella term for motor impairments due to events, including impaired genetic information that occurred during early life. It includes diagnoses like cerebral palsy (CP), Developmental Coordination Disorder (DCD) or genetic syndromes, again umbrella terms for heterogeneous groups of children. The motor disorders are often accompanied by other impairments, e.g. of cognition, communication or social behaviour.13,14

CP is a common cause of motor disorders and defined as “a group of developmental disorders of movement and posture, causing activity restrictions or disability that are attributed to disturbances occurring in foetal or infant brain”.15 This definition implies

that the umbrella term CP describes a very heterogeneous group of children concerning aetiology, type and severity of motor disorders. The aetiology of CP is manifold, but CP is always associated with an early lesion or malformation of the brain.16 Risk factors

for CP include biological factors like genetic aberrations, low birth weight or foetal

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13 growth retardation, preterm birth, hypoxia-ischaemia and intrauterine or neonatal infections.16-20 The severity of CP is dependent on timing, location and extent of the

brain lesion.17 On the basis of the neurological symptoms, three subtypes can be

differentiated: (1) the spastic type with unilateral or bilateral distribution (90%), (2) the dyskinetic type (6%), and (3) the ataxic type (4%).21 The severity of the impairment

ranges from minor dysfunction to major impairments, and can be classified with the Gross Motor Function Classification System (GMFCS).22 The GMFCS distinguishes five

severity levels, based on functional mobility and activity limitations, e.g. sitting and walking ability, but also according to the need of assistive devices. The impairment may range from limitations merely in advanced gross motor skills (GMFCS level I) to severely limited self-mobility even with the help of assistive technology (GMFCS level V).

DCD is defined in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5)23, and in the International Classification of Diseases and Related Health

Problems, Tenth Revision (ICD-10).24 According to DSM-5, DCD is defined by four criteria:

“(1) acquiring and execution of coordinated motor skills is far below expected level for age, given opportunity for skill learning; (2) motor skill difficulties significantly interfere with ADL and impact academic/school productivity, prevocational and vocational activities, leisure and play; (3) onset is in the early developmental period; (4) motor skill difficulties are not better explained by intellectual delay, visual impairment, or other neurological conditions that affect movement.” According to ICD-10, DCD is defined as a “disorder in which the main feature is a serious impairment in the development of motor coordination that is not solely explicable in terms of general intellectual retardation or of any specific congenital or acquired neurological disorder. Nevertheless, in most cases a careful clinical examination shows marked neurodevelopmental immaturities such as choreiform movements of unsupported limbs or mirror movements and other associated motor features, as well as signs of impaired fine and gross motor coordination”. Also this definition implies that DCD describes a heterogeneous group of children concerning aetiology and severity of motor disorders. The aetiology of DCD is largely unknown,25 although an association with preterm birth has been reported.26

Children with DCD are hampered by problems in motor control and anticipatory control of movements,25 resulting in deficits in coordination, balance, gross and fine motor

control.26 Although the definitions of DCD exclude neurological disorders or neurological

conditions, it is becoming more and more clear, that children with DCD may show differences in neural structure and functions in comparison with typically developing peers.25,27 Studies showed that alterations or lesions of multiple brain areas (e.g. white

matter or internal capsule), may be related to the motor impairment of children with

DCD.26,27 However, it should be realized that these minor differences in brain organisation

between children with DCD and typically developing children are only found on group

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level. This means that on an individual level, the difference in brain organisation cannot clearly be determined by means of neuro-imaging. Yet, application of a neurological assessment that pays attention to minor neurological dysfunction (MND),28 reveals

that many children with DCD show complex MND.29 The latter reflects what the

neuro-imaging results indicated, namely that children with DCD often have minor impairments in extensive networks in the brain.27 The motor impairments of children with DCD are

generally less severe than those of children with CP,26 however in children with DCD,

the burden of the disorder in daily life can be very variable, dependent on the degree of motor disorder, comorbidities and environmental factors.25

Developmental motor disorders need time to become expressed, due to the numerous neurodevelopmental changes occurring within the first one and a half years of life30, CP can often not be diagnosed before the age of 18 months31, even though a

proportion of infants nowadays may be detected as being at very high risk in the first 6 months after term age.32 Diagnostic examination for DCD is recommended around

the age of 5 years. However, in exceptional cases it can be made in children at the age of 3 years.25 This implicates that paediatric physiotherapists working in early childhood

intervention are often confronted with infants at high risk of developmental motor disorders, without a specific diagnosis. As plasticity of the brain is highest between preterm age and the age of 18 months post-term, early physiotherapeutic intervention in infants with developmental motor disorders should start as early as possible.30, 33,34

EARLY INTERVENTION IN PAEDIATRIC PHYSIOTHERAPY

History of early intervention in paediatric physiotherapy

Early intervention in infants with a developmental motor disorder is a relatively young discipline. In the 1940s the Irish physiotherapist Eirene Collis learned from parents of children diagnosed with cerebral palsy that the developmental motor disorder of their children had developed cumulatively over the first years of life.35 She was the

first who adumbrated that physiotherapy provided very early in life may have the potential to influence the burdens of CP positively. This assumption of E. Collins had two consequences; (1) she started to treat very young infants, who she appraised to be suspicious of having cerebral palsy, by stimulating normal motor development through offering attractive toys and handling and teaching parents to adopt this stimulation during the day repeatedly, and (2) she aroused the interest of a group of English and Irish doctors to study the development of babies, suspicious of developing CP. This group of doctors, called the ‘Little Club’ started to describe development of these babies in the 1950s. At the same time, Meyer A. Perlstein, a paediatrician from Chicago in the USA, started to observe such infants, independently from the ‘Little Club’, and described early

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15 signs of suspect babies. Both the ‘Little Club’ and M.A. Perlstein realised the importance of knowledge on normal development to understand abnormal development. Another important contribution to early childhood intervention in paediatric physiotherapy at this time, was provided by Karel and Berta Bobath. B. Bobath, a formerly gymnastic teacher and later physiotherapist, discovered through her work with adults with acquired brain lesions that therapy can have an impact on muscle tone.5 This was a

very revolutionary discovery in the 1940s. K. Bobath her husband, a neuropsychiatrist, began to study the literature to support her empirical findings scientifically. This was the beginning of the Bobath Concept, later also referred to as Neuro-Developmental Treatment Approach (NDT). B. Bobath worked also with children with cerebral palsy and began to treat them in a new way. In parallel, K. Bobath studied literature on normal infant development, which had an influence on her way to treat children. The concept of B. and K. Bobath was extended by Elsbeth Köng, a paediatrician, and Mary Quinton a physiotherapist, who were trained by the Bobaths 1957 in London. They applied the Bobath principles in infants in Switzerland. E. Köng36 stressed methods

for early detection of suspect infants, even when diagnosis was not yet possible, and Quinton adapted the Bobath approach for the treatment of infants. The aim of early intervention in physiotherapy at this time was to encourage normal development by specific treatment techniques, before abnormal development is established. Köng’s and Quinton’s contributions to early detection and intervention of infants at risk have become a fundamental part of the Bobath approach.5 These parallel processes in the

1940s and 1950s formed the basics of early diagnosis and early intervention in infants with developmental motor disorders, such as CP.

The continuing transformation of the Bobath Concept

The Bobath Concept is worldwide the most frequently used approach for the therapeutic management and treatment of patients with acquired brain lesions (e.g. stroke), children with cerebral palsy and infants at risk of developmental motor disorder.5 It is an

inter-professional concept used by physiotherapists, occupational therapists, speech-and language therapists, doctors and nurses. In 1960, the Bobaths changed the name to Neuro-Developmental Treatment Approach (NDT). But in practice as well as in the literature, both terms are still used synonymously.37 Due to new experiences, insight

and scientific knowledge, the Bobaths changed their clinical methods and underlying assumptions continuously over the years and these changes continued also after their passing in 1991 until today.

Reflex-inhibiting postures was the first treatment method of the Bobath Concept,

which resulted from Berta Bobath’s clinical discovery that spasticity could be reduced through therapy. Reflex-inhibiting postures were performed in different positions to

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reduce tonic reflexes. The therapist placed the patient in this posture and held him/her there until the muscle tone decreased. The total control over the patient’s body was quite uncomfortable, especially for children.38 Studies from Magnus39 on animal models

about tonic reflexes, supported this method scientifically. As the Bobaths realised that the inhibition of abnormal tone did not carry over into improvement of movements, they discarded this method.5 They concluded that the method was too static38 and

that the children didn’t know how to move, as they lacked movement experiences and their motor development was immature. These ideas led the Bobaths to include motor

development in their approach. They studied the literature on motor development and

included the developmental concepts in the treatment. In the 1940s and 1950s, the Neuromaturational Theory of motor development of Gesell et al.7 and the model of

hierarchical organisation of the nervous system were the dominant theories. Therefore, the Bobath therapists tried to follow the determined developmental sequences of motor behaviours very strictly when treating infants. The treatment was usually performed by the therapist, with the infant as a passive partner.37 The underlying expectation that the

children would combine separately acquired postures into motion sequences and would be able to move from one position into another could not be observed. Unfortunately this technique – already discarded by the Bobaths – has not completely disappeared from clinical practice of physiotherapist working with children and infants.5 AsB. and K.

Bobath became aware of the importance of the automatic components of posture and movement – the righting and equilibrium reactions – to straighten up against gravity and to develop a variety of movements, they developed further methods, namely key

points of control and facilitation techniques.5,38 Key points of control were used to inhibit

spasticity and abnormal movement patterns, while facilitation served the provocation of righting and equilibrium reactions. These methods were more dynamic and allowed the patient some more active participation. An important aim in the treatment of infants was to counteract abnormal movement patterns with normal movement patterns. Therefore, therapists controlled the quality of the infants’ movements with their hands. Köng and Quinton claimed that allowing the infant to perform abnormal movements would encourage the development of an abnormal body image. They were convinced, that the infant at risk needed specific handling to guide movement in the direction of the normal.35 But also in the treatment of adults, improvement of the quality of

performance was an important aim.5 The Bobaths saw abnormal sensory feedback

from abnormal movements as a reason for the difficulty to learn normal movement patterns. They stressed the importance of guiding the motor response through tactile and proprioceptive facilitation techniques in order to normalise the sensory feedback.5

Köng and Quinton shared this opinion and emphasised the importance of ‘feeding’ the infant with guided normal sensorimotor experiences.35 The emphasis on the automatic

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17 components of posture and movement and the belief in the value of this new methods induced a virtual ignorance of the importance of the training of specific and functional tasks in real-life for many years.5 In the treatment of infants and young children, this

led to getting stuck in facilitation of righting and equilibrium reactions in so-called low body positions.38 Also the expectation that facilitation of righting and equilibrium

reactions and providing tactile and proprioceptive information in order to normalise the sensory feedback would lead to functional movements in real-life could not be proven. Treatment was considered as pure exercise without relation to functioning in everyday life.38 These experiences and new scientific insight led to further changes

in the Bobath Concept in the 1960s and 1970s. Milani-Comparetti,40,41 a paediatrician

from Florence, provided an important input to these changes. He studied and described the great variety of changing movement patterns,40 which induced the awareness of

the importance of practicing actively a variety of combined posture and movement patterns simultaneously and oriented to a clear movement goal. Another important contribution to the changes in the Bobath Concept came from Bert Touwen,42 a

paediatric neurologist from Groningen. He studied normal movement development and concluded that variability and inconsistency are characteristics of normal development. All these experiences and knowledge resulted in the following changes in the Bobath Concept: (1) treatment did not have to follow determined development sequences,5

(2) opportunities to actively train sequences of posture and movement sequences and balance in higher positions were provided to young children,38 (3) therapy setting

included more often a task-specific context,5 and (4) manual guidance needed to be

applied more carefully, selective and precise, combined with hands-off periods allowing for trial and error experiences.5 Also these changes were not adopted by all therapists

using the NDT approach. Hands-on facilitation continues to be a key NDT intervention element to ensure postural alignment and facilitate effective synergies in functional patterns. However, nowadays many NDT therapists apply localised, limited inhibition of ineffective posture and movement synergies along with facilitation of active movement sequences, recognising that the specific requirements of the task in context have an influence on posture and movement.5 Furthermore, motor learning concepts, including

changing the environment, self-initiated movement and trial and error, have expanded the treatment options of NDT therapists.

The Bobaths described their approach always with the term “living concept” indicating that the concept will change with new knowledge and experiences. Berta Bobath defined the approach as a problem-solving concept that allows for a wide variety of strategies, flexible enough to be adapted to the individual client.43 The approach has

been continuously changing over time and the modifications vary between countries and instructors teaching the Bobath Concept.44 As a result of this process, NDT therapists

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nowadays apply the concept very electively and manifold. These circumstances brought up a controversy about what NDT actually is and what about it is unique.5 M. Mayston,

a senior Bobath tutor, addressed this controversy in an article on the occasion of the celebration of the 50th anniversary of the Bobath Centre in London.44 Her personal

view is that the concept cannot be changed without the agreement of the Bobaths and this is not possible anymore as the Bobaths are no longer alive. She contemplated efforts to define a contemporary Bobath Concept as critical and she offered – instead of changing the Bobath concept - the following suggestions: (1) to accept and leave the Bobath Concept as defined by the Bobaths, (2) to determine what is still relevant and discard what is not, (3) to provide evidence and sound theoretical basis for what is still relevant based on current literature, and (4) to accept that Bobath is not the alone standing approach for neurologically impaired persons and infants at risk, there are other approaches that are complementary or even preferable to the Bobath Concept for some clients. According to Mayston, nowadays the term Bobath-based approach should be used. This term would express a shift in the recognition of the Bobath Concept, i.e. to recognise the concept as a contributor to client-based neurorehabilitation and early intervention and not as the leading actor in perpetuity.44

As a consequence of all these changes, NDT, the most frequently used infant physiotherapy approach across the world, is nowadays characterized by heterogeneity.6

Evidence of NDT in early intervention

The Bobaths did not conduct any systematic research or data collection, which could be used to provide evidence for the effectiveness of their approach. They developed their methods by clinical experiences and literature studies.5 The same holds true for

Köng and Quinton.31 The lack of clarity what NDT actually is complicates the research

of its effectiveness.Three systematic reviews45-47 addressing the effectiveness of

early intervention in very high risk infants or infants with cerebral palsy, included NDT intervention studies, conducted between 1985 and 2012. All systematic reviews concluded that intervention programmes according to the principles of NDT applied in the first years of life do not have a clear beneficial effect on motor development. Only the systematic review of Hadders-Algra47 suggested that it might be possible that

a minimal application of ‘hands-on’ postural support techniques of NDT during self-initiated activities may be beneficial in young children who develop CP. Furthermore all systematic reviews described the heterogeneity in the applied interventions pertaining to type, frequency, duration and outcome measures, which precludes firm conclusions or evidence-based recommendations for clinical practice. Even within the same type of intervention (e.g. NDT), descriptions of the therapeutic components varied widely.46

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“COPing with and CAring for infants with special needs” (COPCA)

COPCA is a family-centred, physiotherapeutic, early intervention programme. It has been developed since the beginning of this century by Tineke Dirks and Mijna Hadders-Algra, as at that time conclusive evidence for a beneficial effect on motor development of existing physiotherapeutic programmes in high-risk infants could not be established.6 COPCA has two main objectives: (1) to empower the individual family

in processes of decision making, regarding functional activity and participation in daily life and (2) to optimize the current and future motor capacities of the infant with special needs, allowing for optimal participation.6 Correspondingly, COPCA consists of two

components: (1) a family component and (2) a neurodevelopmental component. The first component indicates that the family members are active partners in the intervention process; they are autonomous and responsible. The physiotherapist is in the role of a coach. It is important, that the coach understands the parental needs, because critical to COPCA coaching is that the coach is able to provide the caregivers with proper information, as the parents need to make informed decisions. COPCA occurs in the families’ home environment. During a COPCA session, the coach observes the family members, while they are actively engaged in daily care situation, with the infant (e.g. playing or bathing). The coach shares his/her observation with the caregivers. Sharing observation, active listening, asking reflective questions and providing suggestions may support the family members to explore and develop their own strategies to challenge the infant’s development and to support the child autonomously in daily life. COPCA supports caregiver-infant interaction in such a way that it promotes the infant’s general development, including motor, cognitive and language development. The relationship between the family members and the coach is based on equal partnership and confidence, and the communication is bidirectional and open. The second component is based on the NGST, the leading developmental theory in COPCA6 and principles of

motor learning, deviated from the NGST. NGST pays explicit attention to variation and adaptability9 and emphasizes the need of ample active trial-and-error experiences in

various conditions in order to improve functional development in infants with an early lesion of the brain. The primary aim of challenging the infant to self-produced motor behaviour is to increase the infant’s motor repertoire and to enhance the infant’s capacity to adapt movements to the situation.6,9 Yet, as at early age motor, cognitive

and language development are highly interrelated,9 the playful challenge of the infant

not only serves the stimulation of motor development, but also that of cognitive and language development. COPCA does not aim to normalise movement patterns or to affect muscle tone. The ultimate goal of COPCA is to empower the family with a child with long-term special needs so that the family members can cope with this situation in such a way that they (1) can live life according to their own principles and habits; (2) are

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able to create the best situations to promote their child’s general development; and (3) are able to optimally collaborate with health professionals in charge of the child’s care. The caregivers are informed that development proceeds by means of trial-and-error and self-produced activity requiring ample time and practice.

Evidence of COPCA

In the Netherlands two studies, the ‘Vroegtijdige Interventie Project’ (VIP; Dutch for ‘early intervention project’)48 and the ‘LEARN2MOVE0-2’ study49 evaluated the effect

of COPCA in comparison to that of typical infant physiotherapy (TIP), a mix of NDT and functional approaches. Both studies used a double approach; they combined a randomised controlled trial (RCT) with process evaluation. Process evaluation implies the quantification of physiotherapeutic actions with videos of intervention sessions and association of interventional elements with defined developmental outcomes. 48, 50-52

The VIP included 46 infants with definitely abnormal general movements at ten weeks corrected age (CA); 22% of the infants (n=10) were later diagnosed with CP. The infants had received either COPCA or TIP between three to six months CA. In general, developmental outcomes of the two intervention groups did not differ. However there was one exception. Infants in the COPCA group, whose mothers had relatively little education, showed a significantly smaller drop in the Mental Developmental Index of the Bayley Scales of Infant Development between 6 and 18 months of age than infants from similar families who had received TIP. The process evaluation indicated that the associations between the physiotherapeutic actions and developmental outcome differed for the children who developed CP and those who did not. In the infants diagnosed with CP, two main components of COPCA i.e., (1) caregiver coaching and (2) challenging the infant to self-produced motor behavior with ample trial-and-error experiences, were associated with better motor developmental outcomes at 18 months

CA.48,50 In children who did not develop CP, hands-on techniques were associated with

worse motor outcome at 18 months CA.48

Inthe ‘LEARN 2 MOVE 0-2’ study, 43 infants at very high risk of CP mainly due to a severe brain lesion were included between 0-9 months CA. In this study the infants received COPCA or TIP for 12 months; 51% of the infants (n=22) were later diagnosed with CP.51,52 The study did not find differences between the groups in the developmental

outcomes or associations between physiotherapeutic actions and developmental outcome. However, in the COPCA group the family’s quality of life increased over time, in the TIP group it remained similar. Furthermore the study found a positive association between caregiver coaching and family empowerment.52

The two studies did not only provide some evidence that COPCA may be a promising approach for infants with special needs, they also highlighted the difficulty

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21 to show effects by means of RCTs in infant physiotherapy, because of the heterogeneity of the studied interventions.48,50 At RCT level the studies compared heterogeneous

interventions with partially overlapping contents. As this had been anticipated the studies included a process evaluation. The quantified contents of each intervention allowed for the evaluation of the effect of a concrete action on a specific outcome.

Changes of paradigm in physiotherapeutic early intervention

The comparison of the NDT approach and the COPCA programme illuminates also the changes of paradigm, which have taken place over the last decades. On one side, we see a shift from child-centred to family-centred practice.53 Family-centred practice,

which recognises the importance of including the family as active and equal partners in the child’s care, has become the practice-of-choice in early childhood intervention programmes.54 The shift is accompanied by changes in the way in which professionals

support families. There is a shift from instruction of families to the application of coaching.55,56 Thesechangesgo along with changes of the role of the participants in

the early intervention process – family members and physiotherapists53– and require

several changes of behaviour, which may be challenging. Furthermore, coaching strategies are not spontaneously present, they have to be learned and practised. As the coaching is directed to the parents, it requires knowledge on adult learning,55 i.e.,

the processes that lead to modification of behaviour or the acquisition of new abilities or responses. On the other side, theories of motor development leading therapeutic action have changed, e.g. from the Neuromaturational Theory to the Neuronal Group Selection Theory. These changes are accompanied by changes in the choice of the therapist’s neuromotor actions, e.g. from hands-on facilitation techniques following the determined sequences of motor development, to challenging the infant’s self-produced motor behaviour in varying situations with trial and error experiences. This kind of change requires changes of habits, which have often been practiced over years and have become well-established behaviours. Strong habits are generally hard to unlearn.57

AIM AND OUTLINE OF THE THESIS

The primary aim of this thesis is to provide insight in the application and effect of infant physiotherapy in Switzerland. It focuses in particular on the implementation process of the family-centred early intervention programme COPCA.

• Chapter 2 describes the examination of the psychometric properties of the second version of the Groningen Observer Protocol (GOP 2.0). GOP 2.0 is a tool to quantify contents of paediatric physiotherapy. The study showed that the GOP 2.0 is – after an appropriate training – a reliable tool to assess contents of paediatric physiotherapy.

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• In chapter 3, the GOP 2.0 is used to analyse the contents of typical infant physiotherapy in Switzerland. In Switzerland – like in many other countries - NDT is the most widely used approach in physiotherapeutic early intervention. Yet, it is unknown to what extent actions belonging to NDT are incorporated into infant physiotherapy and whether more recent approaches are also applied. Therefore this chapter evaluates the contents of physiotherapy in infants at risk for motor developmental disorders and assesses whether this contents differs for younger and older infants.

• Chapter 4, a perspective in rehabilitation, discusses the theoretical background of coaching in COPCA and the practical consequences of this background for coaching of families with an infant with a developmental motor disorder, as coaching is the main intervention strategy in COPCA.

• Chapter 5 contains a narrative review; it discusses the challenges of coaching approaches in early intervention. Coaching is applied increasingly often in early intervention. However there are many ambiguities around the concept of coaching. This makes it difficult to evaluate coaching as evidence-based approach. The paper details the ambiguities and the challenges in the incorporation of coaching in daily practice. It concludes with the provision of suggestions for successful implementation.

• Chapter 6 monitors changes in the intervention components applied by Swiss paediatric physiotherapists in the course of a professional education in COPCA. Becoming a COPCA coach as conventionally trained paediatric physiotherapist (e.g. NDT trained) demands behavioural changes. The chapter evaluates how well the physiotherapists were able to change their physiotherapeutic actions and whether this was similar for all therapeutic actions.

• Chapter 7, a qualitative study, evaluated caregivers’ experiences with COPCA. Caregivers’ experiences with COPCA had not been examined before. Knowledge on the caregivers experiences will assist the implementation of COPCA in daily practice.

• Chapter 8 consists of a pilot randomized controlled trial combined with process evaluation, exploring the effects of COPCA and typical infant physiotherapy on motor, cognitive and family outcome in infants born pretern and their familes. It addresses the questions whether (1) child- and family related outcomes differ between the COPCA- and the typical infant-physiotherapy group and (2) if specific physiotherapy actions are associated with the infants’ motor outcome.

• Chapter 9 discusses the findings of the thesis and provides suggestions for further research.

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