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Romantic Relationships and Sexual Experiences of Adolescents and Young Adults with Cerebral ... PDF

209 Pages·2010·5.42 MB·English
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Romantic Relationships and Sexual Experiences of Adolescents and Young Adults with Cerebral Palsy Diana Wiegerink The following members of the Transition Research Group South West Netherlands contributed to this study: Department of Rehabilitation Medicine, Erasmus MC, University Medical Centre, Rotterdam, (M Donker- voort PhD, C Nieuwenhuijsen MSc, J van Meeteren MD PhD); Rijndam Rehabilitation Center, Rotterdam (MP Bergen MD PhD, WMA van der Slot MD, E. Wijnmalen PT, HJR Buijs MD); Sophia Rehabilitation, The Hague (W Nieuwstraten MD†, J.Bender, MSc, A de Grund PT)/ Delft (M Terburg MD, E Celen PT); Department of Rehabili- tation Medicine, Leiden University Medical Center (JH Arendzen MD PhD, MS van Wijlen-Hempel MD PhD); Rijnlands Rehabilitation Center, Leiden (H vd Heijden-Maessen MD); Revant, Goes (Th Voogt MSc). In addition the Rehabilitation Center De Hoogstraat, Utrecht (JW Gorter MD PhD) co-operated. This research has been performed as part of the PERRIN (Pediatric Rehabilitation Research in the Netherlands) research program. With financial support from the Children’s Fund Adriaanstichting (KFA grant number 01.08.06), the Nether- lands Organisation for Health Research and Development and the National Rehabilitation Fund (ZonMw/NRF grant number 1435.0024), Johanna Children’s Fund, Children’s Fund Adriaanstichting, (JKF Number 07.02.28- 2007/0042) and from the Fund for Scientific Research on Sexuality. De omslag van dit proefschrift lijkt op een cover uit de Bouquet reeks. Die romantische verhalen hebben atltijd een ‘happy end’. Dat wens ik ook alle jongeren met CP toe die aan dit onderzoek hebben deelgenomen. Articles are reprinted with permission of respective journals ISBN: 978-90-8559-129-0 Layout and printing: Optima grafische Communicatie, Rotterdam, The Netherlands Romantic Relationships and Sexual Experiences of Adolescents and Young Adults with Cerebral Palsy Verkering en seksuele ervaringen van jongeren en jongvolwassenen met cerebrale parese Proefschrift ter verkrijging van de graad van doctor aan de Erasmus Universiteit Rotterdam Op gezag van de rector magnificus Prof.dr. H.G. Schmidt en volgens besluit van het College van Promoties. De openbare verdediging zal plaatsvinden op woensdag 17 november 2010 om 11.30 uur door Dirkje Johanna Hendrika Gerco Wiegerink geboren te Hengelo (O) PRomoTiECommiSSiE Promotoren: Prof.dr. H.J. Stam Prof.dr. P.T. Cohen-Kettenis Overige leden: Prof.dr. J.J. Van Busschbach Prof.dr. F.C. Verhulst Prof.dr. W.F.M. Arts Copromotor: Dr. M.E. Roebroeck CoNTENTS Chapter 1 General Introduction 7 Chapter 2 Transition to adulthood: Validation of the Rotterdam 17 Transition Profile for young adults with cerebral palsy and normal intelligence Chapter 3 Social and sexual relationships of adolescents and young 37 adults with cerebral palsy: a review Chapter 4 Social, intimate and sexual relationships of adolescents and 53 young adults with cerebral palsy compared with able-bodied age-mates Chapter 5 Development of romantic relationships and sexual activity in 71 young adults with cerebral palsy: a longitudinal study Chapter 6 Sexuality of young adults with cerebral palsy: experienced 87 limitations and needs Chapter 7 Importance of peers and dating in development of romantic 101 relationships and sexual activity of young adults with cerebral palsy Chapter 8 Psychological and environmental factors contributing to 119 participation in romantic relationships and sexual activity of young adults with cerebral palsy Chapter 9 General Discussion 143 Summary 167 Samenvatting 177 Dankwoord 187 Curriculum vitae 191 List of publications 193 Appendix 197 PhD portfolio 207 Chapter 1 General introduction General introduction CEREbRAl PAlSY 1 r e t Cerebral palsy (CP) encompasses a group of chronic disorders characterized by disturbances in posture and p a h movement causing limitations in activities. Its etiology is attributed to non-progressive disturbances that oc- C cur in the developing brain of the foetus or infant. Posture and movement disorders in CP are often accom- panied by disturbances in perception, cognition, communication and behaviour, as well as epilepsy.1 CP is the most common cause of physical disability in childhood with a prevalence of 1.5-2.5 cases per 1,000 live births2-5 and is one of the most frequently occurring medical conditions in childhood.6, 7 Epidemiologic data suggest that the prevalence of CP in the Netherlands has not decreased over time.8 Through improved medi- cal care, many young people with a congenital disability now reach adulthood. If appropriate health care is available, affected children without significant co-morbidities have actuarial survival rates approaching that of the general population.4, 9 TRANSiTioN The transition from childhood to adulthood is a critical period for reaching autonomous participation in adult life.10 The transition from adolescence to adulthood is a normal developmental phase in which young people become independent in many areas of life. Key areas of change are the transition from school to work, de- pendent to independent living, development of personal financial responsibility, the formation of intimate relationships and sexuality, and the organization of independent transportation.11 During transition, the focus of young people shifts away from family-centred activities toward an increase in attention and interest in their circle of friends. For young people with physical disabilities or chronic illness, the transition phase can be par- ticularly difficult. Similar to others of their age, as people with disabilities grow into adulthood they have many new skills to learn. In addition to the usual new skills mentioned above, they need to learn how to cope with limitations in new social roles, at work and intimate relationships.12 Most prior research and interventions have focused on healthcare issues or organization to care for young adults with physical disabilities.13-17 However, young adults with CP also experience unmet needs regarding participation in society such as mobility, em- ployment and social activities.18, 19 Besides specific needs during the transition period, there is a global chal- lenge to incorporate a lifespan perspective into the paediatric, transition phase, and adult health care services for persons with a childhood-onset disability.10 9 Chapter 1 SExuAliTY Sexual development is a multidimensional process, intimately linked to the basic human needs of being liked and accepted, displaying and receiving affection, feeling valued and attractive, and sharing thoughts and feel- ings. It not only involves anatomic and physiologic functioning, but it also relates to sexual knowledge, beliefs, attitudes, and values. Sexuality should be considered in a context that extends beyond genital sex to include gender-role socialization, physical maturation, body image, social relationships, and future social aspirations.20 Adolescence is a period of dynamic transition from childhood to adulthood marked by interrelated changes in the body, the mind, and social relationships. Functioning and behaviour become more complex. The body develops in size, reproductive capacity, and becomes more sexually defined. 21 Love, romance, and courtship are rites of passage for young people in Western society.22 The development of sexuality is also important for adolescents with chronic conditions or physical disabilities. 20 23 In his literature review of young people with physical disabilities, Lock 24 noted three developmental stages of adolescence; each of these phases can bring about specific problems for adolescents with physical dis- abilities related to relationships and sexuality. In the early phase (11-13 years), adolescents are concerned with physical (pubescent) development, such as secondary sex characteristics and changes in outward appearance, also related to the visibility of their disability. In the middle stage (14-16 years), contact with peers becomes central. Among peer groups, there is a lot to learn and share when it comes to dating and sexual experiences. For adolescents, however, social participation with peers can be difficult. In the final stage of adolescent de- velopment (17-19 years), building long-term intimate relationships becomes central and with that, questions about fertility and genetics, related to their physical disability, become prominent. Dependence on parents can make it difficult for some young people to develop adult roles that are important for building a relation- ship necessary for experiencing intimacy. Prior studies have given insight into the sexual experience of young people with physical disabilities 25, 26, described specific aspects of secondary sexual characteristics in children with CP27 and described the psycho- sexual functioning of adults with CP.28 However, less is known about the romantic relationships, sexual devel- opment and experienced limitations of adolescents and young adults with CP. 10

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(CP) are successful or may encounter difficulties. During childhood, children with CP receive intensive and structured rehabilitation treatment and psychosocial support. However, after discharge from paediatric rehabilitation or leaving secondary school, the continuity of care is often disturbed. I
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