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): http://www.rug.nl/research/portal. For technical reasons the number of authors shown on this cover page is limited to 10 maximum. Download date: 11-11-2017
Who cares? Research into maintaining, strengthening, and expanding the informal social networks of people with profound intellectual and multiple disabilities Aafke Kamstra
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 9789073038004 2016 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.
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 14.30 uur door Aafke Kamstra geboren op 30 augustus 1985 te Leeuwarden
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
Content Chapter 1 Introduction 9 1.1. 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 22 2.1. Introduction 23 2.2. Method 24 2.2.1. Participants and setting 24 2.2.2. Data and instruments 25 2.2.3. Analysis 26 2.3. Results 27 2.3.1. Number of informal contact persons 27 2.3.2. Relation between the informal contact person and the person 27 with PIMD 2.3.3. Frequency of the informal contacts of persons with PIMD 29 2.3.4. Type of the informal contacts of persons with PIMD 29 2.4. 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 38 3.1. Introduction 39 3.2. Method 40 3.2.1. Participants and setting 40 3.2.2. Measures 40 3.2.3. Analysis 41 3.3. Results 42 3.3.1. Informal social network size 42 3.3.2. Frequency of the contacts 43 3.4. Conclusion and discussion 44 References 46
Chapter 4 Exploring spontaneous interactions between people with 49 profound intellectual and multiple disabilities and their group members Abstract 50 4.1. Introduction 51 4.2. Method 53 4.2.1. Participants 53 4.2.2. Design 55 4.2.3. Instrument 55 4.2.4. Procedure 58 4.2.5. Analysis 59 4.3. Results 59 4.3.1. Interactions 59 4.3.2. Interactions with group members 60 4.3.3. Positions and interactions between a person with PIMD and a 62 group member 4.4. Discussion 63 4.5. 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 70 5.1. Introduction 73 5.2. Method 76 5.2.1. Participants and setting 76 5.2.2. Data collection 77 5.2.3. Analysis 78 5.3. Results 81 5.3.1. Main category: History 83 5.3.2. Main category: Current situation 83 5.3.3. Main category: Future 86 5.4. Discussion 87 References 90
Chapter 6 Attitudes of professionals to enhancing the informal 93 personal networks of people with profound intellectual and multiple disabilities. Abstract 94 6.1. Introduction 95 6.2. Method 97 6.2.1. Participants and setting 97 6.2.2. Data collection 98 6.2.3. Procedure 99 6.2.4. Analysis 99 6.3. Results 101 6.3.1. Number of quotations, codes and coding categories 101 6.3.2. Importance 102 6.3.3. Maintaining and strengthening the social network 106 6.3.4. Expanding the social network 107 6.3.5. Impeding factors 107 6.3.6. Facilitating factors 109 6.4. Discussion 110 References 114 Chapter 7 General discussion 117 7.1. Summary of main findings 118 7.2. Methodological reflection 120 7.3. Theoretical reflections and future research 121 7.4. Practical implications 123 References 126 Samenvatting 129 References 135 Summary 137 References 141 Dankwoord 143 About the author 147