© Kristin Billaud Feragen, 2009 Series of dissertations submitted to the Faculty of Social Sciences, University of Oslo No. 192 ISSN 1504-3991

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© Kristin Billaud Feragen, 2009

Series of dissertations submitted to the Faculty of Social Sciences, University of Oslo No. 192

ISSN 1504-3991

reproduced or transmitted, in any form or by any means, without permission.

Cover: Inger Sandved Anfinsen.

Printed in Norway: AiT e-dit AS, Oslo, 2009.

Produced in co-operation with Unipub AS.

The thesis is produced by Unipub AS merely in connection with the thesis defence. Kindly direct all inquiries regarding the thesis to the copyright holder or the unit which grants the doctorate.

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The University Foundation for Student Life (SiO)

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First, I want to thank my supervisors, Professor Anne-Inger Helmen Borge and Professor Nichola Rumsey. Thank you both for sharing your competence and experience, while always encouraging me along the way. In spite of a heavy workload, you have both been accessible to offer your expertise and your advice, which was very helpful during the ups and downs of this work. Thank you, Anne Inger, for sharing your optimism and enthusiasm, and for your valuable and important focus on friendships and resilience. Thank you, Nicky, for your faith in me, your warmth, and your invaluable competence in the field of research about visible differences. I am also greatly indebted to Associate Professor Ingela Lundin Kvalem. Thank you for sharing your competence and research ideas even before financial support for this work became a reality. Thanks for providing access to the data from the comparison group for the second paper, thus contributing to new perspectives in the interpretation of results. And thank you for your important suggestions and the time you generously spent helping me during the last week of work! I also want to thank the Norwegian Social Research (NOVA) for granting permission to use data from Young in Norway 2002. I am very grateful for help provided by Dag Erik Eilertsen with statistics for the second paper. Thank you to Donna Stevens who transformed this dissertation into readable English.

I worked on this study while in the employment of Bredtvet Resource Centre and the Oslo CLP Team. Being part of something bigger and on track while sitting in front of my computer and SPSS-files was quite valuable to me. Thanks to Anne-Berit and all colleagues at Bredtvet and Rikshospitalet University Hospital for giving me a feeling of belonging. A special thanks to my colleagues who were in charge of the clinical work as psychologists in the team, providing data for the study in spite of the extra work involved. Without you, Frøydis Tevik, Yvonne Severinsen, and Stine Meløy, I would easily have felt more lonely and vulnerable.

Some people have not been directly involved in this study but have nonetheless, by virtue of what they mean to me, provided me with motivation for my work. My thanks to both of you, Professor Frank Åbyholm and Professor Gunvor Semb, for your almost life-long true and absolute

dedication to the treatment of children, adolescents, and adults born with a cleft lip and/or palate

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and their families, a dedication which has been a strong incentive for my own work as a clinical psychologist and researcher.

I also would like to thank friends and colleagues whose presence and trust in me provided motivation, support, closeness, and intimacy. I especially would like to thank all members of V&V (Karin, Kari, Ingvild, Kristine, Turid, and Brita), Hilda, Kirsten, Susan, Daniele, and Areana for friendship and encouragements all the way, my exercise partners Agnieszka and Grete, as well as Hanne-Marit for her patient listening skills. Thank you Line for your Word-expertise! Thank you, Kirsten and Jarl, for your warm presence. Thanks to my family and all other friends and colleagues, whom I cannot mention as, luckily, their names would fill this page! Thank you to my mother for contributing to this work by occasionally taking one of our children to the theatre, the forest, or home from school. Thanks to my father who housed me during two weeks in St. Laurent-la- Vernède, and gave me the extraordinary opportunity to concentrate totally on the dissertation, along with fantastic meals and French wines!

The biggest hug however, goes to the ones whom I love most of all, Samuel, Miriam, Anaëlle, and my husband, Magne. Thanks to you for reminding me of what means the most in my life – you! – and for accepting the fact that I have been less emotionally available than my conscience dictated during this long three-year period!

This work was totally financed by the EXTRA funds from the Norwegian Foundation for Health and Rehabilitation (grant 2005/2/0201), and supported by the parents’ organization, the Cleft- Lip and Palate Association (Leppe- ganespalteforeningen). I want to thank them for their support and faith in the project. I further wish to thank the Department of Psychology at the University of Oslo for the opportunity of participating in their PhD-programme.

Last, but not least, I want to thank all the children and adolescents, and their families who participated in this study, and in doing so, contributed with their thoughts, experiences, and strategies for coping with the challenges they have encountered. Without you, this work would have been worthless.

Kristin Billaud Feragen, Oslo, June 2009

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cleft lip and/or palate:

Exploring risk and protective factors

Kristin Billaud Feragen Bredtvet Resource Centre

Department of Psychology Faculty of Social Sciences

University of Oslo 2009

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List of papers

Paper 1

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SUMMARY

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% Table 1 Overviewof empirical studies investigating psychological functioning in children and adolescents with a cleft (restricted to psychosocial adjustment emotional adjustment, and appearanceevaluations). ReferenceSample size (Cleft + control) AgeOutcomeMain findings Bilboul et al., 20064914í\UVAppearance Self-perception

Associations between self-perceptions and appearance Broder et al., 1989587 yrsSelf-conceptChildren with CLP had lower self-concept scores Broder et al., 19924955í\UVFacial appearance Speech

CL/CLP: 54% pleased with appearance and 62% with speech Low but significant correlations between child and parental reports Chapman et al., 199820 + 203í\UVConversational skillsPreschool children with cleft less assertive conversational style Coy et al., 20021263íPRQWKVFacial appearance Attachment Less attractive infants associated with higher probability of secure attachment Edwards et al., 200533 adolescents 14 parents

11í\UVQuality of lifeQualitative study: Seven domains identified, such ascoping, emotions, self-image, intimacy, and surgery. Frederickson et al. 200617 + 1733íPRQWKVConversational skills35% produced fewer assertive utterances and lower responsiveness Hunt et al., 20061608í\UVPsychosocial functioning Teasing Appearance Participants with CLP reported more psychological and psychosocial problems than controls. Teasing predicted poorer psychosocial functioning.

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( Kapp-Simon et al., 19924510í\UVSelf-perceptions Social skills & adjustment Social inhibition Self-perceptions, social skills, and inhibition within normal range Adjustment below normal range Kapp-Simon et al. 199713 + 1212í\UVSocial interaction Differences in social interaction patterns: Adolescents with CFA more often at periphery of the group, as observers rather than participants in conversations Kapp-Simon, 198650 + 1725í\UVSelf-conceptChildren with clefts lower self-concepts King et al., 199317 + 3614í\UVSelf-esteem Self-perceptions

Gender differences: females with physical disabilities lower social acceptance, athletic competence, and romantic appeal Krueckeberg et al. 199330 + 223í\UVSocial skills Attractiveness

Children with CFA rated less attractive and with lower social skills Leonard et al., 19911058í\UVSelf-concept98% had average or above average scores, while popularity below norms Gender and age effects (adolescent girls’ lower self-concept than younger girls. Opposite effect for boys) Millard et al., 2001658í\UVFacial appearance and speech Psychological variables

Children with CP showed greater emotional problems Children with CLP showed more appearance-related problems Children with UCLP reported lower levels of depression than children with BCLP and CP Noar, 19913216í\UVSatisfaction with facial appearance and speech Teasing

Adolescents satisfied with appearance and speech Reports of teasing Parents felt adolescents were socially and emotionally affected by the cleft Persson et al., 200255 + 3117í\UVSelf-concept Introversion Adolescents with CLP had normal or higher self-concepts No introversion

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/ Pope et al., 19972411í\UVFacial appearance Psychosocial adjustment Association between social competence, friendships, and self-perceptions of appearance Pope et al., 20057242í\UVBehaviourBehaviour problems Age and gender patterns Richman et al., 1997444í\UVBehaviour Appearance

Longitudinal study. Increased social inhibitionand conduct problems for girls, not related to appearance or speech Richman, 1997656, 9, 12 yrsAppearance and speech Behavioural problems

At age 9, behavior inhibition and speech problems related. At age 12, inhibition and facial disfigurement related Semb et al., 200512717 yrsTeasing Satisfaction with treatment Burden of care

High levels of teasing (74%) Parental reports of teasing (65%) High level of satisfaction with treatment Speltzet al., 1993235í\UVBehavioural problemsMinority had behavioral problems Thomas et al., 1997111 patients 62 parents

10í\UVFacial appearance Psychosocial adjustment

Patients with visible clefts less satisfied with appearance Appearance and psychosocial adjustment associated Low agreement between patients and parents on adolescents’ perceptions of appearance Topolski et al., 200556 + 22611í\UVQuality of lifeAdolescents with visible differences lower quality of life than adolescents with other chronic conditions. Same for relational domains Higher on family domains than adolescents with mobility limitations or ADHD Turner et al., 1997112 patients 130 parents

1í\UVPsychological outcomes Appearance 60% cleft-related teasing Low agreement between patients and parents on perceptions of appearance

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Table 2. Distribution of participants across the three papers.

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Children Adolescents Total sample

Birth cohorts 425 + 393 Æ 818

Excluded children 18 + 24 Æ 42

Included and informed 407 + 369 Æ 776

Participating sample 346 + 315 Æ 661

Type of cleft

Cleft lip and palate 198 + 115 Æ 313

Cleft lip/cleft lip alveolus² 23 + 98 Æ 121

Cleft palate 107 + 77 Æ 184

Submucous cleft palate 18 + 25 Æ 43

Paper 1 Paper 2

Birth cohorts 328 374

Excluded children 13 23

Included and informed 315 351

Participating sample 268 289

Type of cleft

Cleft lip and palate 157 102

Cleft lip/cleft lip alveolus 13 94

Cleft palate 83 69

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Table 3. Frequency of associated difficulties in the child and the adolescent sample of this study.

10-years-old 16-years-old

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Total 346 (100.0) 315 (100.0)

No co-morbid difficulties 263 (76.0) 268 (85.1) 8.58***

Developmental difficulties 40 (11.6) 16 (5.1) 8.93***

Learning difficulties 30 (8.7) 14 (4.4) 4.74*

Other difficulties 13 (3.8) 17 (5.4) 1.02

Syndrome 17 (4.9) 13 (4.1) .24

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difficulties without a syndrome, and some have both.

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Table 4. Frequency of associated difficulties in children and adolescents with a visible and with a non- visible cleft in the total sample.

Visible clefts Non-visible clefts

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Total 434 (100.0) 227 (100.0)

No co-morbid difficulties 371 (85.5) 160 (70.5) 21.22***

Developmental difficulties 29 (6.7) 27 (11.9) 5.22*

Learning difficulties 24 (5.5) 20 (8.8) 2.58

Other difficulties 10 (2.3) 20 (8.8) 14.56***

Syndrome 10 (2.3) 20 (8.8) 14.56**

Note: Some children or adolescents have a syndrome without any associated difficulties, some have associated difficulties without a syndrome, and some have both.

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© Kristin Billaud Feragen, 2009 Series of dissertations submitted to the Faculty of Social Sciences, University of Oslo No. 192 ISSN 1504-3991

Table of contents

cleft lip and/or palate:

Exploring risk and protective factors

SUMMARY

1. Introduction

2. Growing up with a cleft: Psychological functioning

?

3. Aims and research questions

4. Methods

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5. Results

6 =)

6 =)

6 =)

6. Discussion

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