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

209 Pages·2010·5.42 MB·English

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