University of Groningen. Who cares? Kamstra, Aafke

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1 University of Groningen Who cares? Kamstra, Aafke 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: 2017 Link to publication in University of Groningen/UMCG research database Citation for published version (APA): Kamstra, A. (2017). Who cares? Research into maintaining, strengthening, and expanding the informal social networks of people with profound intellectual and multiple disabilities [Groningen]: Rijksuniversiteit Groningen 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): For technical reasons the number of authors shown on this cover page is limited to 10 maximum. Download date:

2 Who cares? Research into maintaining, strengthening, and expanding the informal social networks of people with profound intellectual and multiple disabilities Aafke Kamstra

3 This study was funded by Stichting Wetenschappelijk Onderzoek 's Heeren Loo. Colofon Ontwerp Doks ontwerpbureau, Arnhem Opmaak Ferdinand van Nispen, my-thesis.nl Voorkant: Karlijn Bovee Tekst Aafke Kamstra Druk EPC ISBN Aafke Kamstra. Niets uit deze uitgave mag worden verveelvoudigd en/ of openbaar worden gemaakt door middel van druk, fotokopie, geluidsband, elektronisch of op welke wijze dan ook, zonder schriftelijke toestemming van de auteur.

4 Who cares? Research into maintaining, strengthening, and expanding the informal social networks of people with profound intellectual and multiple disabilities Proefschrift ter verkrijging van de graad van doctor aan de Rijksuniversiteit Groningen op gezag van de rector magnificus prof. dr. E. Sterken en volgens besluit van het College voor Promoties De openbare verdediging zal plaatsvinden op Donderdag 5 januari 2016 om uur door Aafke Kamstra geboren op 30 augustus 1985 te Leeuwarden

5 Promotiecommissie Promotor Prof. dr. C. Vlaskamp Prof. dr. B. Maes Copromotoren Dr. A.A.J. van der Putten Beoordelingscommissie Prof. dr. P.J.C.M. Embregts Prof. dr. J. Goldbart Prof. dr. S. Otten

6 Content Chapter 1 Introduction Outline of the thesis 14 References 16 Chapter 2 The structure of informal social networks of persons with 21 profound intellectual and multiple disabilities. Abstract Introduction Method Participants and setting Data and instruments Analysis Results Number of informal contact persons Relation between the informal contact person and the person 27 with PIMD Frequency of the informal contacts of persons with PIMD Type of the informal contacts of persons with PIMD Conclusion and discussion 30 References 34 Chapter 3 Informal social networks of people with profound 37 intellectual and multiple disabilities: Relationship with age, communicative abilities and current living arrangements. Abstract Introduction Method Participants and setting Measures Analysis Results Informal social network size Frequency of the contacts Conclusion and discussion 44 References 46

7 Chapter 4 Exploring spontaneous interactions between people with 49 profound intellectual and multiple disabilities and their group members Abstract Introduction Method Participants Design Instrument Procedure Analysis Results Interactions Interactions with group members Positions and interactions between a person with PIMD and a 62 group member 4.4. Discussion Conclusion 66 References 68 Chapter 5 Efforts to increase social contact in persons with profound 71 intellectual and multiple disabilities: analysing individual support plans in the Netherlands Abstract Introduction Method Participants and setting Data collection Analysis Results Main category: History Main category: Current situation Main category: Future Discussion 87 References 90

8 Chapter 6 Attitudes of professionals to enhancing the informal 93 personal networks of people with profound intellectual and multiple disabilities. Abstract Introduction Method Participants and setting Data collection Procedure Analysis Results Number of quotations, codes and coding categories Importance Maintaining and strengthening the social network Expanding the social network Impeding factors Facilitating factors Discussion 110 References 114 Chapter 7 General discussion Summary of main findings Methodological reflection Theoretical reflections and future research Practical implications 123 References 126 Samenvatting 129 References 135 Summary 137 References 141 Dankwoord 143 About the author 147

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