University of Groningen
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
Publisher's PDF, also known as Version of record
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
Copyright
Other than for strictly personal use, it is not permitted to download or to forward/distribute the text or part of it without the consent of the author(s) and/or copyright holder(s), unless the work is under an open content license (like Creative Commons).
Take-down policy
If you believe that this document breaches copyright please contact us providing details, and we will remove access to the work immediately and investigate your claim.
Downloaded from the University of Groningen/UMCG research database (Pure): http://www.rug.nl/research/portal. For technical reasons the number of authors shown on this cover page is limited to 10 maximum.
10
Summary
Samenvatting
Acknowledgement
About the author
List of publications
Research institue SHARE
Schirin_Thesis.indd 223
Summary
SUMMARY
This thesis contributes to the body of knowledge regarding effectiveness and implementation of new approaches of physiotherapy for infants at risk of developmental motor disorders. It focuses in particular on the implementation process of the family-centred early intervention programme “COPing with and CAring for infants with special needs” (COPCA).
Chapter 1 of this thesis provides a general introduction. It focuses on theories
and models of paediatric physiotherapy for children with elevated risk of motor disorders. Neuro-Developmental Treatment (NDT) is the most widely used approach in physiotherapeutic early intervention in children with cerebral palsy and infants at risk of developmental motor disorders. This holds true particularly for Switzerland, as E. Köng and M. Quinton, who provided important contributions to NDT in infants at risk, used to work and teach in Switzerland. However, NDT has been continuously changing over time with the result that NDT is nowadays characterised by heterogeneity and NDT therapists apply the concept electively and in manifold ways. This implicates, that the contents of infant physiotherapy in daily practice in Switzerland was largely unknown.
COPCA, a more recently developed physiotherapeutic, early intervention programme, that originated in the Netherlands, was unknown in Switzerland. COPCA is primarily based on principles and elements of family-centered careand the neuronal group selection theory (NGST).Goal-oriented coaching of the family is COPCA’s main intervention strategy. NDT and COPCA are based on different paradigms, e.g. in respect to the focus of the therapy or the way, how family members are educated. The professional role of a NDT therapist differs from that of a COPCA coach and change of role requires change of behaviour. Therefore, it was likely, that the implementation of COPCA in Switzerland would be a complex process, that would be worthwhile studying. Insight into the implementation process could result in a better understanding of learning processes of paediatric physiotherapists in general.
Chapter 2 describes the examination of the psychometric properties of the second
version of the Groningen Observer Protocol (GOP 2.0), a tool to quantify contents of paediatric physiotherapy. This was an important starting point, as I aimed to use the GOP 2.0 in multiple parts of this thesis, e.g. to quantify the contents of typical infant physiotherapy (TIP) in Switzerland, to evaluate changes of contents over time, to report intervention elements in a randomized controlled pilot study, and to conduct a process evaluation, that would allow for the evaluation of associations between specific intervention elements and defined outcomes. The study showed, that the GOP 2.0 – after appropriate training – is a reliable tool to assess contents of paediatric physiotherapy in Switzerland, and therewith an appropriate tool for the evaluations mentioned above.
In chapter 3 the contents of TIP in Switzerland in infants at risk of motor
225 Summary whether the contents differed for younger and older infants. The study, conducted prior to the implementation of COPCA in Switzerland, provided insight in the extent to which physiotherapeutic actions belonging to NDT or to the more recent COPCA approach, were incorporated. The study indicated, that early physiotherapy intervention followed evidence-based recommendations only to a limited extent. These encompass family-centred practice, family coaching and provision of trial-and-error experiences. This information revealed a need for efforts aiming at implementing COPCA among physiotherapists in Switzerland.
Chapter 4 comprises a perspective paper on coaching in rehabilitation. Coaching
is the main intervention strategy in COPCA. The paper describes and critically 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 disorder. The perspective consists of four sections: (1) the meta-model of COPCA’s coaching including the concept of the human being, ethical attitudes and ideals, (2) theories underlying COPCA: family-centred practice,the neuronal group selection theory, the transactional model of development,coaching theories (the goal-oriented coaching approach),family system theory,communication theoryand humanistic psychology,(3) translation into practice consisting of the aims of coaching in COPCA, the setting, understanding of intervention, focus of attention, communication, relationship and role allocation, and (4) the praxeology section, describing the required knowledge of a COPCA coach and coaching skills. The perspective serves COPCA coaches as a framework, and it can be used as a reference to describe the intervention of the COPCA group in studies examining the effect of 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 an evidence-based approach. The paper especially discusses the inconsistencies in the terminology of coaching used in the literature of early intervention programmes. We described the key components of ‘Parent training’ and ‘Parent coaching’, which are both labelled as ‘coaching’ in the literature. However, literature also suggests that ‘Parent training’ and ‘Parent coaching’ are two different approaches, with different attitudes and goals. This inconsistency in terminology hampers the incorporation of coaching in relationship-directed, family-centred intervention (RD-FCI). Therefore, we suggested to use the term ‘coaching’ exclusively for coaching provided in RD-FDI. The review provides suggestions about the use of the term coaching, highlights challenges and barriers relating to the implementation of coaching approaches in practice and concludes with the provision of suggestions for successful implementation of RD-FCI based on literature.
Schirin_Thesis.indd 225
Summary
Chapter 6 monitored changes in practice of paediatric physiotherapists in
Switzerland in the course of a professional education in COPCA. The COPCA course lasted six months and consisted of three parts of contact days and two intervals. Conventionally trained paediatric physiotherapists in Switzerland with the desire to become a COPCA coach need to change therapeutic behaviour. The chapter evaluates how well the physiotherapists were able to change their physiotherapeutic practice and whether this was similar for all therapeutic actions. The results showed, that already after the first contact days, the physiotherapists changed their actions considerably. The changes indicated a shift from a child-centred to a family-centred form of early physiotherapeutic intervention and an increased application of the neuromotor principles of the neuronal group selection theory. However, therapeutic actions representing strong habits, such as the application of hands-on techniques, changed less extensively and less sustainably. To understand the challenges and barriers encountered on the path of becoming a COPCA coach, and to develop strategies to master these challenges and barriers, behaviour change theories were used. On the basis of the findings of this study the curriculum of the COPCA course has been adapted.
Chapter 7, a qualitative study, evaluated caregivers’ experiences with COPCA with
a study specific questionnaire consisting of three open-ended questions. The shift from child-centred to family-centred practice and from instruction of families to the application of coaching demanded also changes in the role of family members. They had to give up the expectation, that the physiotherapist is treating their infant and they had to partake the role as an active partner in the intervention process. We did not know, how caregivers coped with the role given to them in COPCA, as caregivers’ experiences with COPCA had not been examined until then. All questionnaires were filled out by mothers. The study revealed that the responding mothers evaluated COPCA as a very suitable form of intervention for the whole family. They described benefits of COPCA for the infants as well as for the caregivers. The mothers appreciated especially the home-based aspect of the intervention, the support from the COPCA coaches, the attainment of new competences, and being involved in the intervention process as active and equal partners. The learning process during the six months of COPCA intervention had enabled them to support the infant at home autonomously, to recognise the competences of the infant and therewith to gain confidence in the infant’s development. The results of the study suggest that COPCA is not only a theoretical framework for COPCA coaches, but also translates meaningfully into daily practice for the mothers. Knowledge on the caregiver’s experiences has and will further assist the implementation of COPCA in daily practice.
Chapter 8 consists of an randomized controlled pilot trial combined with process
evaluation, investigating the effects of six months of COPCA or TIP on motor, cognitive and family outcome in infants born pretern and their familes. It addresses the questions
227 Summary whether (1) child- and family related outcomes differ between the COPCA and the TIP groups and (2) if specific physiotherapy actions are associated with the infants’ motor outcome. Although only a small sample was included, the study population represented a group of infants with mildly to moderately increased risk of motor impairment. The study demonstrated, that COPCA in comparison to TIP resulted in better outcome at 18 months corrected age in the Infant Motor Profile (IMP) domains variation and performance. Moreover, a time-group interaction in these two IMP domains was present, indicating that the COPCA group improved significantly more between baseline and follow-up than the TIP group. The difference emerged especially between the end of the intervention and follow-up at 18 months indicating that families were empowered to independently continue with the treatment. The process evaluation showed, that two actions characteristic of TIP, namely caregiver training and hands-on techniques, were negatively associated with scores on the IMP domain variation. In contrast, the typical COPCA action, caregiver coaching, was positively associated with scores on the IMP domain performance. The study concluded that caregiver coaching is a promising and sustainable intervention element. It enables parents to challenge the infants’ motor development on the long run and in an autonomous way in their real-life environment. In turn, the challenges allow the infant to increase his/her motor repertoire. Hands-on techniques in infants with no or Hands-only a mild brain lesiHands-on seem to interfere with the infants’ explorative activity and therewith may reduce the opportunities for enhancing the motor repertoire.
In conclusion, this thesis suggests that:
• The GOP 2.0 is a valuable tool to quantify contents of paediatric physiotherapy interventions in Switzerland. It also allows conducting process evaluation, which in turn may provide insight in the potential influences of intervention on outcome.
• Early physiotherapy intervention as practiced by the physiotherapists in Switzerland follows evidence-based recommendations like family-centred practice, family coaching and provision of trial-and-error experiences, only to a limited extent. This indicates, that careful monitoring of the implementation of evidence-based recommmendations in daily practise of physiotherapeutic early intervention in Switzerland is mandatory.
• The application of coaching approaches demands the acquisition of new knowledge and skills, and a change of professional attitudes and habits. Thus, a successful implementation of coaching approaches requires role adaptations. • Coaching is a promising intervention element, which may assist a sustainable
improvement of infant and family outcomes.
Schirin_Thesis.indd 227
Samenvatting
SAMENVATTING
Dit proefschrift draagt bij aan de kennis over de effectiviteit en de implementatie van nieuwe benaderingen in de fysiotherapie voor baby’s met een verhoogd risico op motorische ontwikkelingsstoornissen. De studie concentreert zich daarbij vooral op het implementatieproces van het gezinsgerichte vroege interventie programma COPing
with and CAring for infants with special needs (COPCA).
Hoofdstuk 1 van het proefschrift bevat de algemene inleiding. Het richt zich
met name op de theorieën en modellen die binnen de kinderfysiotherapie worden gebruikt bij de behandeling van kinderen met een verhoogd risico op motorische ontwikkelingsstoornissen. Neuro-Developmental Treatment (NDT) is de meest gebruikte fysiotherapeutische benadering bij de vroege interventie van kinderen met cerebrale parese of baby’s met een verhoogd risico op een motorische ontwikkelingsstoornis. Dit geldt ten zeerste voor Zwitserland, waar E. Köng en M. Quinton werkten en onderwezen. Beide dames leverden belangrijke bijdragen aan de ontwikkeling van NDT bij baby’s met een verhoogd risico op ontwikkelingsstoornissen. NDT veranderde echter in de loop der jaren voortdurend. Het maakte dat NDT tegenwoordig wordt gekenmerkt door heterogeniteit. Ook passen NDT-therapeuten het concept electief en gevarieerd toe. Het gevolg van dit alles is dat de inhoud van babyfysiotherapie in de dagelijkse praktijk in Zwitserland grotendeels onbekend is.
COPCA, een kinderfysiotherapeutisch programma voor jonge kinderen dat nog niet zo lang geleden in Nederland werd ontwikkeld, was onbekend in Zwitserland. COPCA is primair gebaseerd op de principes en elementen van gezinsgerichte zorg en de neuronale groep selectie theorie (NGST).Doelgericht coachen van het gezin is de belangrijkste interventiestrategie van COPCA. NDT en COPCA zijn gebaseerd op verschillende paradigma’s, met onder andere verschillen in de focus van de interventie en de wijze waarop het gezin in de interventie wordt betrokken. De professionele rol van een NDT-therapeut verschilt van die van een COPCA-coach, waardoor het overgaan van de ene benadering naar de andere een gedragsverandering vereist. Het viel daarom te verwachten dat de implementatie van COPCA in Zwitserland een complex en bestuderingswaardig proces zou zijn. Inzicht in het implementatieproces zou kunnen resulteren in een algemeen beter begrip van leerprocessen bij kinderfysiotherapeuten.
Hoofdstuk 2 beschrijft het onderzoek naar de psychometrische eigenschappen van
de tweede versie van het Groningen Observer Protocol (GOP 2.0), een instrument om de inhoud van kinderfysiotherapie te kwantificeren. Dit was een belangrijk startpunt, omdat ik GOP 2.0 in verschillende deelstudies van het proefschrift wilde gebruiken, bijvoorbeeld om de inhoud van typische babyfysiotherapy (typical infant physiotherapy (TIP)) in Zwitserland te kwantificeren, om veranderingen over de tijd te documenteren, om de interventie-elementen in een pilot gerandomiseerd onderzoek te rapporteren,
229 Samenvatting en om een procesevaluatie uit te voeren door gekwantificeerde fysiotherapeutische handelingen te associëren met ontwikkelingsuitkomsten van het kind. Het onderzoek liet zien dat GOP 2.0 – na voldoende training – een betrouwbaar instrument is om de inhoud van kinderfysiotherapie in Zwitserland te documenteren. Daarmee was het een geschikt instrument voor de boven beschreven doelen.
In hoofdstuk 3 werd de inhoud van TIP-behandelingen in Zwitserland bij baby’s
met een verhoogd risico op motorische ontwikkelingsstoornissen geanalyseerd. Het onderzoek ging ook in op de vraag of de inhoud van de therapie toegepast bij jonge baby’s verschilde van die van oudere baby’s. Het onderzoek, dat werd uitgevoerd voor de implementatie van COPCA in Zwitserland, verschafte inzicht in welke mate fysiotherapeutische handelingen kenmerkend voor NDT of voor COPCA werden toegepast. Het onderzoek gaf aan dat in de fysiotherapeutische behandelingen van baby’s de professionele, op evidentie gebaseerde, aanbevelingen maar ten dele worden toegepast. Voorbeelden van dergelijke aanbevelingen zijn gezinsgericht coachen en het kind laten leren door uitproberen (trial & error). De resultaten maakten duidelijk dat de omscholing van Zwitserse therapeuten naar COPCA-coach nog wel enige voeten in aarde zou hebben.
Hoofdstuk 4 bevat een perspectivisch paper over coachen in de revalidatie.
Coachen is de belangrijkste interventiestrategie van COPCA. Het stuk beschrijft en bespreekt op kritische wijze de theoretische achtergrond van coachen in COPCA en de praktische consequenties van deze achtergrond voor het coachen van gezinnen met een kind met een ontwikkelingsstoornis. Het perspectief heeft vier onderdelen: (1) het meta-model van coachen in COPCA, met o.a. het concept van mens zijn, ethische attitudes en idealen, (2) de theorieën waarop COPCA berust: gezinsgerichte begeleiding, de neuronale groep selectie theorie, het transactionele model van ontwikkeling, theorieën overcoachen (de doelgerichte benadering van coachen),gezinssysteem theorie,communicatie theorie, en humanistische psychologie,(3) vertaling van theorie in praktijk met onder meer de doelen van het coachen in COPCA, de setting, begrip van de interventie, aandachtfocus, communicatie, rollen en relaties, en (4) het onderdeel praxeologie, dat de beschrijft welke kennis en coachvaardigheden een COPCA coach nodig heeft. Het perspectief fungeert als raamwerk voor COPCA-coaches; het kan ook worden gebruikt als referentiekader voor de beschrijving van COPCA in onderzoeken die het effect van COPCA bestuderen.
Hoofdstuk 5 bevat een narratief review; het bespreekt de uitdagingen van de
toepassing van coachen in vroege interventie. Coachen wordt in vroege interventie steeds vaker toegepast. Het concept van coachen is echter omgeven door ambiguïteit. Dit maakt het lastig om coachen te evalueren als een op evidentie gebaseerde benadering. Het stuk gaat in het bijzonder in op de inconsistenties in terminologie van
Schirin_Thesis.indd 229
Samenvatting
coachen in de vroege interventie literatuur. Wij beschreven de sleutelcomponenten “Trainen van ouders” en “Coachen van ouders”, die in de literatuur beiden “coachen” worden genoemd. De literatuur laat echter ook zien dat “Trainen van ouders” en “Coachen van ouders” twee verschillende benaderingen met verschillende attitudes en doelen zijn. De inconsistentie in terminologie doorkruist de implementatie van coachen in interventies die relatie- en gezinsgericht zijn (relationship-directed,
family-centred intervention (RD-FCI)). Daarom stelden we voor om de term “coachen” alleen
te gebruiken voor het coachen binnen RD-FCI. De review verschaft suggesties over het gebruik van de term coachen, het belicht de uitdagingen en barrières bij de implementatie van coachen in de dagelijkse praktijk, en het besluit – op grond van de literatuur - met voorstellen hoe coachen in RD-FCI kan worden geïmplementeerd.
Hoofdstuk 6 volgde de veranderingen in het praktisch handelen van Zwitserse
kinderfysiotherapeuten, die een COPCA-cursus volgden. De COPCA-cursus duurde zes maanden en bestond uit drie onderdelen met contactonderwijs en twee intervallen. Wanneer kinderfysiotherapeuten in Zwitserland COPCA-coach willen worden, betekent dit, dat zij hun therapeutische gedrag moeten veranderen. Dit hoofdstuk bestudeert hoe goed de therapeuten in staat waren om hun fysiotherapeutisch handelen te veranderen, en of dit voor alle therapeutische handelingen op gelijke wijze plaats vond. De resultaten gaven aan dat de therapeuten al na het eerste contactonderwijs hun fysiotherapeutisch handelen aanzienlijk veranderden. De veranderingen duidden op een verschuiving van kindgerichte naar gezinsgerichte vroege interventie, en een toename in het toepassen van de neuromotorische principes van de neuronale groep selectie theorie. Echter, therapeutische handelingen gebaseerd op vaste gewoontes, zoals de toepassing van hands-on technieken, veranderden minder sterk en ook minder aanhoudend. Om de uitdagingen en de barrières op de weg van het COPCA-coachschap te verklaren werden theorieën over gedragsverandering gebruikt. Deze theorieën vormden ook het kader voor de ontwikkeling van strategieën om de uitdagingen en barrières te tackelen. Inmiddels werd op basis van de resultaten van dit onderzoek het curriculum van de COPCA-cursus aangepast.
Hoofdstuk 7, een kwalitatief onderzoek, evalueerde de ervaringen van verzorgers
met COPCA met behulp van een voor dit doel specifiek ontwikkelende vragenlijst met drie open vragen. De verandering van kindgerichte naar gezinsgerichte begeleiding en van instructie van gezinnen naar coachen vraagt ook veranderingen in de rol van gezinsleden. De gezinsleden moeten afscheid nemen van de gedachte, dat de fysiotherapeut het kind behandelt; er wordt van hen verwacht dat zij als actieve partner meedoen in de interventie. Wij wisten niet, hoe verzorgers zouden omgaan met de rol die COPCA hen toebedeelt, dit was nog niet onderzocht. Alle vragenlijsten werden ingevuld door moeders. Het onderzoek liet zien dat de moeders COPCA als een heel
231 Samenvatting geschikte vorm van interventie voor het hele gezin ervoeren. Volgens de moeders profiteerden niet alleen de kinderen maar ook zijzelf van het COPCA-programma. De moeders gaven aan dat zij met name de volgende aspecten van COPCA waardeerden: het feit dat COPCA thuis werd uitgevoerd, de ondersteuning door de COPCA-coaches, het verwerven van nieuwe vaardigheden, en betrokken zijn in de interventie als actieve en gelijkwaardige partner. Gedurende de zes maanden van COPCA-interventie hadden ze geleerd hun kind in de thuissituatie autonoom te ondersteunen en de competenties van het kind te herkennen, waardoor ze vertrouwen hadden gekregen in de ontwikkeling van het kind. De resultaten van het onderzoek geven aan dat COPCA is niet alleen een theoretisch raamwerk is voor COPCA-coaches, maar dat het zich ook zinvol vertaald naar moeders in de dagelijkse praktijk. Kennis over ervaringen van verzorgers heeft inmiddels de verdere implementatie van COPCA in de dagelijkse praktijk bevorderd; dit proces zal in de toekomst verder gaan.
Hoofdstuk 8 bevat een pilot gerandomiseerd onderzoek, dat gecombineerd werd
met procesevaluatie, naar het effect van zes maanden COPCA of TIP op de motorische en cognitieve ontwikkeling van prematuur geboren baby’s en op het functioneren van het gezin. Het gaat in op de vragen of (1) de uitkomsten van kind en gezin verschillen tussen de COPCA en de TIP groepen en (2) specifieke kinderfysiotherapeutische handelingen geassocieerd zijn met de motorische ontwikkeling van de kinderen. De kleine onderzoeksgroep bestond uit kinderen met een licht tot matig verhoogd risico op ontwikkelingsstoornissen. Het onderzoek liet zien dat COPCA in vergelijking met TIP resulteerde in een betere uitkomst op 18 maanden gecorrigeerde leeftijd op de domeinen variatie en vaardigheden van de Infant Motor Profile (IMP). Bovendien was er sprake van een interactie tussen tijd en groep, hetgeen betekende dat de COPCA-groep significant meer verbeterde tussen baseline en follow-up dan de TIP-groep. Het verschil ontstond vooral tussen het einde van de interventie en de follow-up op 18 maanden. Dit geeft aan dat de gezinnen op eigen kracht de interventie konden voortzetten. De procesevaluatie liet zien dat twee handelingen die kenmerkend zij voor TIP, namelijk trainen van verzorgers en hands-on technieken, geassocieerd waren met lagere scores op het IMP domein variatie. Daarentegen was het coachen van verzorgers, kenmerkend voor COPCA, geassocieerd met hogere scores on het IMP domein vaardigheden. De conclusie van het onderzoek was dat het coachen van verzorgers een veelbelovend interventie-element is dat mogelijk aanhoudende effecten heeft. Het coachen maakt het ouders mogelijk om hun kinderen tijdens de motorische ontwikkeling te blijven uitdagen, op hun eigen autonome manier in hun eigen dagelijkse omgeving. De uitdagingen verschaffen het kind de mogelijkheid om zijn motorische repertoire uit te breiden. Hands-on technieken by baby’s zonder hersenbeschadiging of met slechts een lichte hersenbeschadiging lijken te interfereren met de exploratieve activiteit van het
Schirin_Thesis.indd 231
Samenvatting
kind en kunnen daardoor de mogelijkheden van het kind om zijn repertoire te vergroten juist doen afnemen.
Concluderend, dit proefschrift geeft aan dat:
• GOP 2.0 een waardevol instrument is om de inhoud van kinderfysiotherapie in Zwitserland te kwantificeren. Het instrument maakt het ook mogelijk om procesevaluaties uit te voeren, die op hun beurt inzicht kunnen verschaffen in potentiële effecten van interventie op uitkomsten.
• Vroege fysiotherapeutische interventie gepraktiseerd door Zwitserse kinderfysiotherapeuten komt slechts in beperkte mate overeen met de op evidentie gebaseerde aanbevelingen, zoals die over gezinsgerichte begeleiding en het verschaffen van mogelijkheden van uitprobeeractiviteit (trial &
error). Dit betekent dat in Zwitserland een zorgvuldige monitoring van de
implementatie van op evidentie gebaseerde aanbevelingen in de dagelijkse kinderfysiotherapeutische praktijk dringend gewenst is.
• De toepassing van coachen vergt de verwerving van nieuwe kennis en vaardigheden en een verandering in professionele attitudes en gewoontes. Met andere woorden, een succesvolle implementatie van coachen vergt rolveranderingen.
• Coachen is een veelbelovend interventie-element, dat zou kunnen leiden tot aanhoudende verbeteringen in de uitkomsten van kind en gezin.
233 Acknowledgements
ACKNOWLEDGEMENTS
On January 4th 2012 I wrote an email to Prof. Dr. Mijna Hadders-Algra, introducing myself and telling her, that I was playing with the idea of doing a PhD. On the very same day she responded with an invitation for a meeting in March 2012, when she planned to be in Switzerland for an IMP course. At this meeting, Prof. Dr. Mijna Hadders-Algra was very open towards my ideas. However she expressed some reservations considering my age and an expected time horizon of approximately 10 years to complete a PhD, given my professional circumstances. She sent me back home with the request to discuss this long-term project broadly with my family and to rethink this plan seriously myself. She also offered me a further meeting in September 2012, when she would be back in Switzerland for another course.
Dear Mijna, your suggestion to rethink this long-term project seriously and to discuss the plan broadly with my family was the first of many more precious pieces of advices I received from you over time. Without the unconditional support of my family and my own firm wish and conviction to do this, such a project would not have been feasible. At that meeting in September, after I had fulfilled your request, you accepted me as a PhD candidate and agreed to be my doctoral thesis supervisor. This decision led to a PhD collaboration of eight years, which was a very unique journey with a remarkable companion. Often it was very inspiring, fascinating and favourable and sometimes it was also very challenging, tough and sobering. Nonetheless, I never regretted, that we went in on this journey. During all these years you were an exquisitely reliable, supportive but also ambitious and demanding tutor and escort. It is a big gift for me to have had the opportunity to be accompanied by you and that we were able to inspire each other in our collaboration. Thank you so much for all the support.
COPCA has, like children, two parents; Tineke Dirks and Mijna Haddes-Algra. Without you Tineke, COPCA wouldn’t exist. I have a deep respect for your initiative to develop COPCA, your knowledge, and your experience and most of all your generosity to share this with the next generation. You encouraged me to sing my own song. I appreciate what I could learn from you and I am very grateful for this.
Next, I would like to sincerely thank all infants, children and family members who participated in the studies of this thesis. The same holds true for all paediatric physiotherapists: thank you very much. Without your highly appreciated involvement in the research projects, we would not have been able to obtain new findings.
I want to express special thanks to Prof. Dr. Astrid Schämann and Prof. Dr. Erika O. Huber. Dear Astrid and Omega, you two supported me since the start of my PhD journey, whenever needed. Thanks to your support I obtained the software programme ‘The Observer XT’, which provided the possibility to analyse the many videos and to
Schirin_Thesis.indd 233
Acknowledgements
gain important knowledge. Dear Omega, it’s very pleasant having you on my side as my paranymph until the ‘Hora finita’.
I also would like to express my deep gratitude to my co-promoters Prof. Dr. Markus Wirz and Dr. Tjitske Hielkema. Both of you gave me often useful feedback on my manuscripts and support for the publication of the studies. Dear Markus, you also supported me for the third-party founding, the ethical approval and the quality assurance and control of the RCT. ‘Beste’ Tjitske, the discussions with you and your studies on COPCA were a helpful guide on my PhD-way. I could learn much from you and the methods you used. Thank you so much.
A great thank goes to André Meichtry for his statistical support and the analyses he performed for the studies of the thesis. Dear André, you spent much time with me, patiently explaining me the statistics and the meaning of the data. It is a pleasure that you are on my side as my paranymph until the ‘Hora finita’.
Dear Patrizia, Michèle and Elena, thank you for your company on my PhD-journey as study participants, co-authors and coaches of COPCA coaches. I very much appreciated your professional support.
Moreover I would like to thank all other co-authors of the manuscripts of this thesis, in particular Barbara Gessbach Oertle, Dr. Jan Kool, Heleen Reimers-Messelink, Dr. Michael von Rhein, and the Swiss Neonatal & Follow-Up Group.
PD Dr. Giancarlo Natalucci, Dr. Katharina Jockers, Prof. Dr. Sven Schulzke and Dr. Oliver Mayer, I would like to express my gratitude that you participate as principle investigators in my exploratory randomized controlled trial, examining the effects of COPCA and TIP on developmental outcome in very preterm infants. Without your support, ethical approval had not been obtained and recruitment of infants and families would not have been possible.
Anneke Kracht-Tilman, for me you have always been the fairy godmother, always fulfilling my special needs, like designing nice figures, transferring video recordings, solving bureaucratic obstacles. You also cared about my physical well-being, when I was at the UMCG. Thank you so much for all your outstanding help and assistance.
I also would like to thank all members of the MSc-, professional education- and research and development team, particularly Prof. Dr. Karin Niedermann, my line manager, for all emotional and encouraging support given over the years.
Without money, research is not possible. I am very grateful for the financial support I received from the School of Health Professions, Zurich University of Applied Sciences, Winterthur, Switzerland, the Swiss foundation for the child with cerebral palsy (Schweizerische Stiftung für das cerebral gelähmte Kind), the Anna Mueller Grocholski foundation, the Jubiläumsstiftung der Schweizerischen Mobiliar Genossenschaft and the research fund of the Swiss Association of Physiotherapy.
235 Acknowledgements I thank the members of the PhD Assessment Committee: Prof. Dr. Arie F. Bos, Prof. Dr. Hubertus J.A. Van Hedel, and Prof. Dr. Eugene A.A. Rameckers. Thank you for the critical reading and assessment of my PhD thesis, for your time and interest in my work.
A life with good friends is a life worth living. I always had the great fortune, being surrounded by invaluably dear friends, who accompanied me in my life and provided me – especially during the PhD period - emotional support. Dear Claudia Atzori, Angelica Sprunger, Ines Egli, Karin Plaschy, Madeleine Heuri, Joseph Arnold, Lisa Boef, Karin Baumgarner, Daniel Erni, Jeannette Dieziker, Reto Gadola, thank you so much for your friendship. A special thank is due to Angelica and her friends, who spent a lot of time in the design of the cover of this thesis and to Ines, who counterchecked the whole thesis.
Liebe Mami, lieber Papi eure bedingungslose Liebe und Unterstützung haben mich mein ganzes Leben lang begleitet. Ihr habt mir früh in meinem Leben beigebracht auch herausfordernde Situationen zu meistern und meinen eigenen Weg zu finden. Dafür danke ich euch von ganzem Herzen. Hab euch ganz fest lieb. Liebe Eva, lieber Roberto, als Partner von meinen Eltern, habt auch ihr mich und meine Familie immer unterstützt, ganz herzlichen Dank. Kjan und Mithra, ich war mein Leben lang glücklich euch beide als Bruder und Schwester zu haben, danke, dass ihr immer für mich da wart und seid. Samuel and Anahita, my well beloved kids, you never complained all this years, having a mother who spent much time with her research work, rather you expressed your respect for my power of endurance and your thankfulness for all I have done for our family. Without your support, and your independency, I would never have been able to go this way to the end. You are wonderful kids and I love you with all my heart. Dear Matthias, my dearly beloved husband and friend, in 2012 you said yes to my PhD plan and assured me of your support, a premise to start out with the PhD. You kept your promise all this years and stood by my side as a supporting pillar. To be married to a flute player had the benefit that you also often had to work on evenings and weekends, which gave me the free space to work on my PhD. However, it meant that I often was absent in the audience of your concerts and sometimes also mentally absent when you were at home. Fortunately we were able time and again to create free space in terms of holidays, for the two of us and for our family. I’m full of thankfulness and love.
It is not, that I did not know before how many professionals, children and families, colleagues, friends and own family members supported me for this PhD, however, first while writing these acknowledgements I fully realised how many people had been involved, had spent their time for me and gave me assistance, encouragement and sympathy. Without you, this thesis would not have been possible. I am deeply grateful to all of you.
Schirin_Thesis.indd 235
About the author
ABOUT THE AUTHOR
Schirin Akhbari Ziegler was born in Münsterlingen, Switzerland, on March 7, 1966. She spent her childhood in the northern part of Switzerland and moved in 1986, after finishing grammar school, to Zurich to become a physiotherapist. In 1990 she graduated as physiotherapist at the School for Physiotherapy at the University Hospital of Zurich. Aft er one year of work in the department of neurosurgery at the university hospital, she worked between 1991 and 2002
for a charity serving the special needs of infants and children with a developmental disorder. In this period she completed multi ple professional courses (e.g. NDT, Sensory Integrati on) in order to become a specialist in paediatric physiotherapy. In 1995 she married the fl ute player Matt hias Ziegler; they got two children: Samuel, born in 1997, and Anahita in1999. Between 2001 and 2004 she completed a professional educati on to become a coach and supervisor. She conti nued her clinical work as a freelance paediatric physiotherapist in her domicile at the lake of Zürich unti l 2015. In 2002 she started to work part-ti me as lecturer in paediatric physiotherapy at the School for Physiotherapy at the University Hospital of Zurich unti l 2008. Due to changes in the Swiss educati onal system, physiotherapy became an academic study at the Zurich University of Applied Sciences. To qualify as university lecturer she completed a Master of Sciences in neuro-rehabilitati on at the Donau-University in Krems in Austria (2007-2010). Since 2009, she works as a lecturer in paediatric physiotherapy at the Zurich University of Applied Sciences. She is a co-developer of the curriculum of paediatric physiotherapy in the Bachelor of Sciences (BSc), in the Master of Sciences (MSc) and in the Diploma of Advanced Sciences (DAS). Currently, she is the head of the focus paediatric physiotherapy in the MSc physiotherapy and the DAS. In 2012 she started to work as PhD-student under the guidance of Prof. Dr. M. Hadders-Algra. She also became a member of the research team at the insti tute of physiotherapy at the Zurich University of Applied Sciences. Her PhD thesis focuses on the implementati on process of the family-centred early interventi on programme COPCA, which had been developed by T. Dirks, a Dutch paediatric physiotherapist, and Prof. Dr. M. Hadders-Algra. In due ti me Schirin Akhbari Ziegler became a coach of COPCA coaches, and currently she directs internati onal COPCA courses, off ered since 2019 as a professional educati on at the Zurich University of Applied Sciences.
Aft er the graduati on as PhD, Schirin Akhbari will conti nue her teaching and research acti viti es at the Zurich University of Applied Sciences. However, her plan and heart’s desire is to combine this with clinical work, that is working as a COPCA coach with infants and families.
237 List of publications
LIST OF PUBLICATIONS
Huber EO, Akhbari Ziegler S, Leutsch M, Schämann A. Entwicklung und Umsetzung einer
ICF-basierten Software zur Patientendokumentation als Lernprozessbegleitung in der Physiotherapie-Weiterbildung im der Schweiz. Pädagogik der Gesundheitsberufe. 2015; 1:48-55. Sonderer P, Akhbari Ziegler S, Gressbach Oertle B, Meichtry A, Hadders-Algra
M. Psychometric Properties of a Standardized Observation Protocol to Quantify Pediatric Physical Therapy Actions. Pediatr Phys Ther. 2017; 29:244–250. doi: 10.1097/ PEP.0000000000000398
Akhbari Ziegler S, Dirks T, Reinders-Messelink HA, et al. Changes in Therapist Actions
During a Novel Pediatric Physical Therapy Program: Successes and Challenges. Pediatr
Phys Ther. 2018; 30:223–230. doi: 10.1097/PEP.0000000000000509
Akhbari Ziegler S, Hadders-Algra M. Die Theorie der Selektion neuronaler Gruppen als
handlungsleitende Theorie in der pädiatrischen Physiotherapie. Physiotherapie. 2018; 18 (5): 22-24.
Hadders-Algra M, Akhbari Ziegler S. Das Infant Motor Profile. Physiotherapie. 2018; 18 (6): 20-23. Akhbari Ziegler S, Dirks T, Hadders-Algra M. Coaching in early physical therapy
intervention: the COPCA program as an example of translation of theory into practice.
Disabil Rehabil. 2019; 41:1846–1854. doi: 10.1080/09638288.2018.1448468
Akhbari Ziegler S, Mitteregger E, Hadders-Algra M. Caregivers’ experiences with the
new family-centred paediatric physiotherapy programme COPCA: a qualitative study.
Child Care Health Dev. 2020; 46:28–36. doi:10.1111/cch.12722
Akhbari Ziegler S, Hadders-Algra M. Coaching approaches in early intervention and paediatric
rehabilitation. Dev Med Child Neurol. 2020, epub ahead of print doi: 10.1111/dmcn.14493.
Akhbari Ziegler S, Hielkema T, Meichtry A, Sonderer P, Gressbach Oertle B, Wirz M, Kool
J, Hadders-Algra M. Limited application on evidence-based recommendations on family-centred practice and motor learning in infant-physiotherapy in Switzerland. Submitted.
Akhbari Ziegler S, von Rhein M, Meichtry A, Wirz M, Hielkema T, Hadders-Algra M and
the Swiss Neonatal Network &Follow-Up Group. Effect of two paediatric physiotherapy approaches on motor development in very preterm infants: an exploratory randomized controlled trial combined with process evaluation. Submitted.
Schirin_Thesis.indd 237
SHARE previous dissertations
RESEARCH INSTITUTE SHARE PREVIOUS
DISSERTATIONS
This thesis is published within the Research Institute SHARE (Science in Healthy Ageing
and healthcaRE) of the University Medical Center Groningen / University of Groningen. Further information regarding the institute and its research can be obtained from our internet site: http://www.share.umcg.nl/
More recent theses can be found in the list below. (supervisors are between brackets)
2020
Buijs-Spanjers KR
Improving delirium education: the role of experiential learning in a serious game
(prof SEJA de Rooij, prof ADC Jaarsma)
Karsten MDA
Women’s lifestyle and sexual function; The effects of a preconception intervention in women with obesity
(prof A Hoek, prof TJ Roseboom, dr H Groen)
Koops JC
Understanding nonmarital childbearing. The role of socio-economic background and ethnicity in Europe and North-America.
(prof AC Liefbroer, prof AMH Gauthier)
Wasir R
Moving forward to achieve universal health coverage in Indonesia: progress and challenges
(prof E Buskens, prof MJ Postma, dr W Goetsch)
Kramer T
How to develop a Grand Slam winner…; physical and psychological skills in Dutch junior tennis players
(dr MT Elferink-Gemser, prof C Visscher, dr BCH Huijgen)
Raven D
Where’s the need? The use of specialist mental health services in adolescence and young adulthood
239 SHARE previous dissertations
Stoter IK
Staying on track; the road to elite performance in 1500 m speed skating
(dr MT Elferink-Gemser, prof C Visscher, prof FJ Hettinga)
Silva Lagos LA
Gestational diabetes mellitus and fetoplacental vasculature alterations; exploring the role of adenosine kinase in endothelial (dys)function
(dr MM Faas, prof T Plösch, prof P de Vos, prof L Sobrevia)
Reints R
On the design and evaluation of adjustable footwear for the prevention of diabetic foot ulcers
(prof ir GJ Verkerke, porf K Postema, dr JM Hijmans)
Bekhuis E
A body-mind map; epidemiological and clinical aspects of the relation between somatic, depressive and anxiety symptomatology
(prof JGM Rosmalen, prof RA Schroevers, dr L Boschloo)
Havinga PJ
Breaking the cycle? Intergenerational transmission of depression/anxiety and opportunaties for intervention
(prof RA Schoevers, prof CA Hartman, dr L Boschloo)
Geer SJ van der
Trismus in head and neck cancer patients
(prof PU Dijkstra, prof JLN Rodenburg, dr H Reintsema)
Salavati N
Preconception environmental factors and placental morphometry in relation to pregnancy outcome
(prof JJHM Erwich, prof RM van der Beek, dr MK Bakker, dr SJ Gordijn)
Fels IMJ van der
Movement, cognition and underlying brain functioning in children
(dr E Hartman, prof C Visscher, prof RJ Bosker, dr J Smith)
For earlier theses visit our website
Schirin_Thesis.indd 239
