Parental adaptation in families of young children with cerebral palsy

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1 Parental adaptation in families of young children with cerebral palsy Ingrid Rentinck

2 Cover design Kitty van der Veer, Proefschrift.nu Layout Renate Siebes, Proefschrift.nu Printed by Labor Grafimedia BV, Utrecht ISBN I.C.M. Rentinck All rights reserved. No part of this publication may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopy, recording, or any information storage or retrieval system, without permission in writing from the author.

3 Parental adaptation in families of young children with cerebral palsy Kinderen met cerebrale parese: wat gebeurt er met de ouders? (met een samenvatting in het Nederlands) Proefschr if t ter verkrijging van de graad van doctor aan de Universiteit Utrecht op gezag van de rector magnificus, prof.dr. J.C. Stoof, ingevolge het besluit van het college voor promoties in het openbaar te verdedigen op dinsdag 3 november 2009 des ochtends te uur door In g r i d Cecilia Ma r i a Re n t i n c k geboren op 4 maart 1972 te Utrecht

4 Promotoren: Co-promotoren: Prof.dr. M.J. Jongmans Prof.dr. E. Lindeman Dr. M. Ketelaar Dr. J.W. Gorter De studie beschreven in dit proefschrift werd mede mogelijk gemaakt door de financiële steun van ZonMw (projectnummer ), het Johanna KinderFonds en Stichting Bio kinderrevalidatie. De totstandkoming van dit proefschrift werd mede mogelijk gemaakt door financiële steun van de Stichting Wetenschappelijk Fonds De Hoogstraat te Utrecht.

5 Contents Chapter 1 Introduction 7 Chapter 2 Parents of children with cerebral palsy: a review of factors related to the process of adaptation Chapter 3 Parental reactions following the diagnosis of cerebral palsy in their young child Chapter 4 Parents reactions to the diagnosis of cerebral palsy: Associations between resolution, age and severity of disability Chapter 5 Short-term changes in parents resolution regarding their young child s diagnosis of cerebral palsy Chapter 6 Perceptions of family participation among parents of children with cerebral palsy followed from infancy to toddlerhood Chapter 7 Summary and discussion 81 Samenvatting (Summary in Dutch) 93 Dankwoord 103 Curriculum vitae 109

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7 Introduction 1

8 Chapter 1 Introduction Introduction For most parents, the birth of their child is a unique and touching moment. During pregnancy parents generally build up optimistic expectations of how their child will become and how they will be as parents (Leerkes & Burney, 2007). However, in some families a child is born with a physical disability, which may have serious consequences not only for a child s functioning but also for the family (Raina et al., 2005). Among the large variety of childhood developmental disabilities, cerebral palsy (CP) is considered to be the major physical disability affecting the functional development of children (Jones, Morgan, Shelton, & Thorogood, 2007) with a prevalence of 2 to 2.5 per 1000 live births (Dolk, Parkes, & Hill, 2006; Hutton & Pharoah, 2006). CP describes a group of disorders of the development of movement and posture, causing activity limitations that are attributed to non-progressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of CP are often accompanied by disturbances of sensation, cognition, communication, perception, and/or behaviour, and/or by a seizure disorder (Rosenbaum et al., 2007). There is increasing evidence that the social and developmental status of children with CP is influenced by family factors including the kind of parenting children receive. Likewise, the psychological and physical health of caregivers is strongly influenced by child behaviour and caregiving demands (e.g., Aran, Shalev, Biran, & Gross-Tsur, 2007; Ketelaar, Volman, Gorter, & Vermeer, 2008; Plant & Sanders, 2007; Raina et al., 2005; Rosenbaum et al., 2007; Sanders, 2008; Vermaes, Janssens, Mullaart, Vinck, & Gerris, 2008;Young, Dixon-Woods, Findlay, & Heney, 2002). One theoretical framework which takes into account such interrelatedness of family members is family systems theory. According to this theory, the family is interactive, interdependent and reactive to change. Phenomena impacting on an individual family member are also likely to impact on other members of the family system (Maitz & Sachs, 1995; Seligman & Darling, 2007), that is, no one is exempt from the effects of a disability in the family. Additionally, a bioecological systems approach presumes that families are also part of a larger social context. Families are affected by institutions (e.g., hospitals, clinics, work, etc.) that are removed from the family yet play an important role in the supportive structure that surrounds them. Beyond the family and the institutions, there are major social-political forces that facilitate or hamper families efforts on behalf of the person with a disability (Bronfenbrenner & Morris, 1998). For parents, caring for a young child with CP can be a challenging experience and usually requires a significant amount of energy for the entire family over a long period of time (Barnett, Clements, Kaplan-Estrin, & Fialka, 2003; DeMarle & le Roux; 2001; Hirose & Ueda; 1990; Piggot, Paterson, & Hocking, 2002). These parents often spend more time involved in direct caregiving tasks with their children than parents of typically developing children and are often required to undertake tasks which are (physically) demanding (e.g., lifting and positioning, administering medication). At the same time it is known that behaviour problems are common in children with CP (Carlsson, Olsson, Hagberg, & Beckung, 2008) and these problems have an added impact upon a parent s ability to undertake the numerous tasks associated with caregiving, and thus the burden of care for parents increases (Plant & Sanders, 2007). Furthermore, parents of young children with CP have to accomplish the tasks of parenting, all at a 8

9 time in which they are initially confronted with the diagnosis of a physical disability in their child. When parents receive this diagnosis they might realize that their child might always be different from other children, and that their child might not meet their hopes and expectations for what is normally regarded as a typical development (Ahlström, 2007; Piggot, Hocking, & Paterson, 2003). Moreover, the prognosis is often not clear so for the parents it is a wait and see situation. However, despite the strains related to a disability, caring for a child with special needs is not primarily a story of gloom. Evidence suggests that there is considerable variation in how caregivers adapt to the situation regarding the diagnosis of their child. Some parents perceive their life as difficult and more negative, and seem to grieve openly and deeply for years. Others appear to cope well with added demands, without apparent disruption in their ability to function at work or in close relationships. These parents seem to move on to new challenges with apparent ease or even report high satisfaction and enjoyment of their role as parents (Bonnano, 2004). But why do some parents remain relatively resilient, while others have difficulty in managing the situation related to the rearing process of their child with CP? And how can professionals support parents in their emotional process? So far, little is known about the process of adaptation of parents of young children with CP. As a result, professionals working with these parents are not yet fully able to comprehend the impact of a disability on a family. Recent years have witnessed increased interest in the effects a disability of a child might have on a family. Also in the Netherlands, rehabilitation professionals have become aware of the concept of Family Centered Services (FCS), acknowledging that all families are unique and different, and that optimal child functioning occurs within a supportive family and community context (King, Teplicky, King, & Rosenbaum, 2004). The role of parents in the care process evolved from being a target for intervention without any control into the role of an equal partner in the decision-making processes of treatment and determining the contents of their child s care (Siebes et al., 2007; Turnbull, Turbiville, & Turbiville, 2000). In line with the development of FCS, the Netherlands Association for Medical rehabilitation (Revalidatie Nederland), the Dutch society of rehabilitation doctors (VRA), the association of schools for physical handicapped children (VMT / LZK 3) and some parent associations (i.e., BOSK and VSN) suggested several long-term aims for paediatric rehabilitation in the Netherlands. Among these are that a) families should be the central focus of professional services, b) it is important to develop informative and supportive programs for families, and c) that rehabilitation services, families and parent associations should collaborate with each other (Mos, 2001). As a result, for example, the project Gezin in Zicht currently aims to implement FCS theory / concepts into rehabilitation practice (Willems, 2009). However, systematic research efforts focusing on the emotional and practical consequences for a family in which a child with CP grows up are scarce. Furthermore, rehabilitation professionals are not specifically educated to treat families as a whole system. From this point of view, it is understandable that professionals still feel more comfortable practicing in a biomedical model concentrating on child functioning (Bamm & Rosenbaum, 2008). In sum, the literature as well as professional care has focused mainly on the needs and developmental aspects of CP from a child perspective. However, from a family systems Chapter 1 Introduction 9

10 Chapter 1 Introduction perspective it is important that rehabilitation services broaden their tasks from a client perspective into a family perspective. While studies focusing on the consequences of CP in a child for a family are lacking, we have chosen to focus in this thesis primarily on the parents of preschool children with CP. We are specifically interested in the gaps in knowledge regarding (change in) parental reactions to the diagnosis of their child as well as on their perceived family participation. Parental reactions to the diagnosis of a childhood disability Receiving a diagnosis of a disability of their child is for most parents an intense episode in which personal intense emotions are triggered. In clinical practice, large differences can be seen in the intensity and duration of the reactions of parents related to this diagnosis. The literature has indicated that parental reactions regarding a diagnosis may change over time. For example, Piggot and colleagues (2002, 2003), who retrospectively interviewed eight parents of children with CP (aged 2 10 years), suppose that parents usually go through two phases when their child is diagnosed. These authors presume that the initial process of adjusting to having a child with CP begins when parents are confronted with the fact that their child will not develop as they might have expected and that life could present ongoing struggles for them and for their child. This process involves obtaining the medical diagnosis, coping with the severity of impairments and facing the unpredictability of the child s prognosis. In a second phase, parents turn their attention to the needs of their child to maximize their child s progress and on quality of life for all family members (Piggot et al., 2002; Piggot et al., 2003). Other authors have highlighted the ongoing nature of the adaptation process of families of children with disabilities, when at each developmental stage and transition phase parents are confronted with new aspects of their child s disability (Barnett et al., 2003; Larson, 1998). Although such a changing perspective seems to be plausible, so far studies which have applied a longitudinal design to examine this process are scarce. Marvin & Pianta (1996) developed a standardized, reliable procedure for assessing parents success in resolving their child s diagnosis. Based largely on attachment theory and research, the Reaction to Diagnosis Interview (RDI) is intended to assess the degree to which the parent is able to move beyond the crisis of the diagnosis and reorient to the reality of the child s condition. In addition to the coping literature, in which it is generally reported that parents who use coping strategies that focus on problem-solving and social support have more positive adjustment outcomes than parents who use strategies that focus on denial, escape, and avoidance of difficulties (e.g., Abbeduto et al., 2004; Gavidia-Payne & Stoneman, 1997; Judge, 1998), Marvin & Pianta identified three effective strategies of resolution and six strategies indicating a lack of resolution (Pianta, Marvin, Britner, & Borowitz, 1996). Although studies using the RDI have provided insight in single relations between resolution and some possible determinants (e.g., type of diagnosis, cognitive functioning, parental stress or social support), there is still a gap in knowledge regarding the interrelations between multiple variables such as severity of the disability and coping of the parents and (change in) resolution. Previous research focused on either child 10

11 or parent and partner variables in relation to maternal resolution. It is conceivable that it is the interaction between different aspects that determines the resolution of parents. Furthermore, little attention has thus far been paid to the specific strategies of resolution that parents may use in their reaction to hearing the news of the diagnosis of their child. Finally, little is known about stability of parental resolution status. Chapter 1 Introduction Participation in relation to childhood disability Raising a child with CP may have serious consequences not only for the emotional well-being of a parent, but also for the opportunity of families as a whole to perform everyday activities. Through parenting, parents exert the greatest influence during the first three years of a child s life, a period particularly important for brain growth and a window of opportunity to promote optimal development (Shapiro, Prinz, & Sanders, 2008). Parents of young children with CP are faced with the same parenting tasks like typically developing children. However, parenting a child with CP presents greater and more complex challenges at both a physical, practical, and emotional level. Besides the emotional impact of a diagnosis on the whole family, parents are often required to complete additional tasks which are specific to their child s disability. For example, parents have to assist their children in daily activities (e.g., bathing, feeding, play, moving around), complete therapy to support their child s learning and development or initiate social and recreational activities in which their child is able to participate (Plant & Sanders, 2007). These additional tasks related to the disability of a child, may disturb the typical activities that families are used to. However, such typical daily activities are deemed to be essential for the development of the child (King et al., 2003). Through participation in daily life situations, children acquire skills and competencies, connect with others and their environment and eventually find purpose and meaning in life (Law, 2002). The opportunities to perform everyday activities afford children social and nonsocial experiences that enhance their learning and development, which in turn promotes increased participation in other activities which further shape children s developmental courses (Dunst, 2002). From this perspective there is a growing interest in the concept of participation, which is defined by the International Classification of Functioning, Disability and Health (ICF), as the involvement of a person with disabilities in life situations (WHO, 2001). So far, however, the literature on participation of children with a physical disability has focused on children of school age and older. We are aware of only one study that has reported on participation of families of preschool children with physical disabilities (Ehrmann, Aeschleman, & Svanum 1995). One explanation might be that it is difficult to disentangle the participation of a young child from that of their family (McConachie, 2006). Almost all of the experiences gained by young children, such as play, family routines at home, leisure and shopping activities, visiting relatives and going on holiday are acquired in family contexts. For children of preschool age, it therefore probably makes more sense to evaluate participation within the context of the family. While participation has been described as an objective dimension of human life, i.e., as an observable involvement in society, less attention has been paid to the subjective dimension of functioning, an aspect of human life that takes into account the values and / or meaning for a person (Ueda & Okawa, 2003). Considering the large variation in how caregivers adapt to the situation regarding the diagnosis of their child, a parent 11

12 Chapter 1 Introduction perception perspective might be an important indicator of participation restrictions of the family. In sum, there is a growing awareness that the presence of a child with CP in a family may have serious consequences for the opportunity of families to participate in daily life situations. However, little is known about the way the presence of a child with CP in a family influences such participatory activities. Because parenting plays a pivotal role in the outcome of participation of a young child, it probably makes more sense to evaluate participation within the context of the family, and particularly from a parent perception perspective. Aim of this thesis The aim of this thesis was to gain knowledge about the process of adaptation of parents of young children with CP. Two topics were investigated, i.e., change in parental reactions regarding the diagnosis of their child and parental perceptions of family participation. Three research questions were formulated: What is known from the literature about the way and extent to which families of children with CP adapt to their child s diagnosis? Are parents of young children with CP able to resolve the diagnosis of their child, which child and parent variables are related to parental resolution, and how does resolution change over time? To what extent do parents of young children with CP perceive that their family participation is restricted because of their child s physical disability and do these perceptions change over a 2-year period? This study was part of a longitudinal research program entitled Paediatric Rehabilitation Research in the Netherlands (PERRIN). In the PERRIN program, the course and determinants of functional status of children and adolescents with CP are studied. In PERRIN CP 0 5, the focus is both on the development of activities and participation of young children with CP between 0 and 5 years of age and on the consequences for their parents and the families in which they grow up. In the first years of a child s life, parents exert a great influence on the development of their child. While CP has its origin in early life and in most cases the diagnosis has been disclosed to parents in the first year of life, one can assume that around the age of 18 months, parents have overcome their first consternation of the diagnosis of their child. Furthermore, this might be the time that parents start to ask questions about the future of their child and seek help in paediatric treatment centres. Therefore, we have chosen to focus on parents of preschool children. Assuming the ongoing nature of the process parents go through after their child has been diagnosed, we used both a cross-sectional and longitudinal design to investigate such processes. 12

13 Outline of this thesis Chapter 2 presents a systematic review of the literature focusing on the process of adaptation of parents raising a child with CP. We are specifically interested in the current knowledge about the relation between the disability of a child and the perceived levels of parental stress and coping among parents of children with CP. We focus on the determinants of these parental outcomes as well as on the knowledge about the changes in parental adaptation as a result of child development and changing stages of family life over time. In the studies described in Chapters 3, 4 and 5, we are interested in parental resolution regarding their child s diagnosis, specific at preschool age. Chapter 3 describes how many parents of young children with CP are able to reorient on the present reality of their child s condition (i.e., percentage of resolution), and also relationships between difficulty with resolution and severity of CP, cognitive functioning of the child, as well as coping of the parent and social and practical support of the partner. The aim of Chapter 4 is to investigate resolution at different ages of the child (i.e., toddler age, school age and teenage) and factors related to resolution. Chapter 5 aims to study changes in parental state of mind regarding diagnosis ( resolved vs. unresolved ) and in strategies of resolution. The purpose of Chapter 6 is to describe the way parents of children with CP perceive their involvement in family and personal life situations, also called family participation. We are interested if parents of young children with CP experience their family participation as restricted. The thesis concludes with a general discussion (Chapter 7) of the reported findings, focusing on the implications and recommendations for research, clinical practice, and policy makers. Chapter 1 Introduction References Abbeduto, L., Seltzer, M. M., Shattuck, P., Krauss, M. W., Orsmond, G., & Murphy, M. M. (2004). Psychological well-being and coping in mothers of youths with autism, Down syndrome, or fragile X syndrome. American Journal on Mental Retardation, 109, Ahlstrom, G. (2007). Experiences of loss and chronic sorrow in persons with severe chronic illness. Journal of Clinical Nursing, 16, Aran, A., Shalev, R. S., Biran, G., & Gross-Tsur, V. (2007). Parenting style impacts on quality of life in children with cerebral palsy. Journal of Pediatrics, 151, Bamm, E. L., & Rosenbaum, P. (2008). Family-centered theory: origins, development, barriers, and supports to implementation in rehabilitation medicine. Archives of Physical Medicine and Rehabilitation, 89, Barnett, D., Clements, M., Kaplan-Estrin, M., & Fialka, J. (2003). Building new dreams. Supporting parents adaptation to their child with special needs. Infants and Young Children, 16, Bonnano, G. A. (2004). Loss, trauma and human resilience. American Psychologist, 59,

14 Chapter 1 Introduction Bronfenbrenner, U., & Morris, P. A. (1998) The ecology of developmental processes. In R. M. Lerner (Ed.), Handbook of Child Psychology (pp ). New York, USA: Wiley. Carlsson, M., Olsson, I., Hagberg, G., & Beckung, E. (2008). Behaviour in children with cerebral palsy with and without epilepsy. Developmental Medicine and Child Neurology, 50, DeMarle, D. J., & Roux le, P. (2001). The life cycle and disability: experiences of discontinuity in child and family development. Journal of Loss and Trauma, 6, Dolk, H., Parkes, J., & Hill, N. (2006). Trends in the prevalence of cerebral palsy in Northern Ireland, Developmental Medicine and Child Neurology, 48, Dunst, C. J., Hamby, D., Trivette, C. M., Raab, M., & Bruder, M. B. (2002). Young children s participation in everyday family and community activity. Psychological Reports, 91, Ehrmann, L. C., Aeschleman, S. R., & Svanum, S. (1995). Parental Reports of Community Activity Patterns: A comparison between young children with disabilities and their nondisabled peers. Research in Developmental Disabilities, 16, Gavidia-Payne, S., & Stoneman, Z. (1997). Family predictors of maternal and paternal involvement in programs for young children with disabilities. Child Development, 68, Hirose, T., & Ueda, R. (1990) Long-term follow-up study of cerebral palsy children and coping behaviour of parents. Journal of Advanced Nursing, 15, Hutton, J.L., & Pharoah, P.O. (2006). Life expectancy in severe cerebral palsy. Archives of Disease in Childhood, 91, Jones, M. W., Morgan, E., Shelton, J. E., & Thorogood, C. (2007). Cerebral palsy: introduction and diagnosis (part I). Journal of Pediatric Health Care, 21, Judge, S. L. (1998). Parental coping strategies and strengths in families of young children with disabilities. Family Relations, 47, Ketelaar, M., Volman, M. J., Gorter, J. W., & Vermeer, A. (2008). Stress in parents of children with cerebral palsy: what sources of stress are we talking about? Child: Care, Health and Development, 34, King, G., Law, M., King, S., Rosenbaum, P., Kertoy, M. K., & Young, N. L. (2003). A conceptual model of the factors affecting the recreation and leisure participation of children with disabilities. Physical and Occupational Therapy in Pediatrics, 23, King, S., Teplicky, R., King, G., & Rosenbaum, P. (2004). Family-centered service for children with cerebral palsy and their families: a review of the literature. Seminar of Pediatric Neurology, 11, Larson, E. (1998). Reframing the meaning of disability to families: The embrace of paradox. Social Science and Medicine, 47, Law, M. (2002). Participation in the occupations of everyday life. American Journal of Occupational Therapy, 56, Leerkes, E. M., & Burney, R. V. (2007). The development of parenting efficacy among new mothers and fathers. Infancy, 12, Maitz, E. A., & Sachs, P. R. (1995). Treating families of individuals with traumatic brain injury from a family systems perspective. Journal of Head Trauma Rehabilitation, 10, Marvin, R. S., & Pianta, R. C. (1996). Mothers reactions to their child s diagnosis: relations with security of attachment. Journal of Clinical Child Psychology, 25(4),

15 McConachie, H., Colver, A. F., Forsyth, R. J., Jarvis, S. N., & Parkinson, K. N. (2006). Participation of disabled children: how should it be characterised and measured? Disability and Rehabilitation, 28, Mos, J. (2001). Jongleren met mogelijkheden. Zoetermeer: Stichting Toekomstscenario s Gezondheidszorg (STG). Pianta, R. C., Marvin, R. S., Britner, P. A., & Borowitz, K. C. (1996). Mothers resolution of their children s diagnosis: organized patterns of caregiving representations. Infant Mental Health Journal, 17, Piggot, J., Hocking, C., & Paterson, J. (2003). Parental adjustment to having a child with cerebral palsy and participation in home therapy programs. Occupational Therapy in Pediatrics, 23, Piggot, J., Paterson, J., & Hocking, C. (2002). Participation in home therapy programs for children with cerebral palsy: A compelling challenge. Qualitative Health Research, 12, Plant, K. M., & Sanders, M. R. (2007). Reducing problem behavior during care-giving in families of preschool-aged children with developmental disabilities. Research in Developmental Disabilities, 28, Raina, P., O Donnell, M., Rosenbaum, P., Brehaut, J., Walter, S. D., Russell, D., et al. (2005). The health and well-being of caregivers of children with cerebral palsy. Pediatrics, 115, e626-e636. Rosenbaum, P., Paneth, N., Leviton, A., Goldstein, M., Bax, M., Damiano, D., et al. (2007). A report: the definition and classification of cerebral palsy April Developmental Medicine and Child Neurology (Suppl.), 109, Sanders, M. R. (2008). Triple P-Positive Parenting Program as a Public Health Approach to Strengthening Parenting. Journal of Family Psychology, 22, Seligman, M. & Darling, RB. (2007) Ordinary families, special children: a systems approach to childhood disability (3rd ed.). New York, USA: Guilford Press. Shapiro, C. J., Prinz, R. J., & Sanders, M. R. (2008). Population-wide parenting intervention training: Initial feasibility. Journal of Child and Family Studies, 17, Siebes R. C., Wijnroks L., Ketelaar M., van Schie P. E., Gorter J. W., & Vermeer A. (2007). Parental participation in paediatric rehabilitation treatment centres in the Netherlands: a parents viewpoint. Child: Care, Health and Development, 33, Turnbulll A. P., Turbiville, V., & Turbiville, V. (2000). Evolution of family-professional partnerships: Collective empowerment as the model for the early twenty-first century. In J. Shonkoff, & S. Meissels (Eds.), Handbook of Early Childhood Intervention (2nd ed., pp ). Cambridge, UK: Cambridge University Press. Ueda S., & Okawa Y. (2003). The subjective dimension of functioning and disability: what is it and what is it for? Disability and Rehabilitation, 25, Vermaes I. P., Janssens J. M., Mullaart R. A., Vinck A., & Gerris J. R. (2008). Parents personality and parenting stress in families of children with spina bifida. Child: Care, Health and Development, 34, Willems, M. (2009, March). Ouders kunnen het je gewoon vertellen. Revalidatie Magazine, p. 4. World Health Organisation (2001). International classification of Functioning, Disability and Health (ICF). Geneva: World Health Organization. Young B., Dixon-Woods M., Findlay. M., & Heney, D. (2002). Parenting in a crisis: conceptualising mothers of children with cancer. Social Science and Medicine, 55, Chapter 1 Introduction 15

16 Chapter 1 Introduction 16

17 2 Parents of children with cerebral palsy: a review of factors related to the process of adaptation I.C.M. Rentinck, M. Ketelaar, M.J. Jongmans, J.W. Gorter Child: Care, Health and Development 2007; 33:

18 Chapter 2 Parental adaptation in children with CP: a review Abstract Objective: Little is known about the way parents adapt to the situation when their child is diagnosed with cerebral palsy. Methods: A literature search was performed to gain a deeper insight in the process of adaptation of parents with a child with cerebral palsy and on factors related to this process. The selected articles were examined with respect to (i) the type and purpose of the study, (ii) study sample, (iii) variables and instruments and (iv) results on adaptation and stress of the parents. Results: Twenty-two studies were found, which showed a large variety in research designs, instruments and populations. Despite methodological differences, it was possible to extract a number of factors related to resources of individual family members, the family unit as a whole and in the community, family appraisal and adaptive coping. Conclusion: It is important to realize that parents adaptation may change as a function of their child s development and changing stages of family life over time. Until now crosssectional studies have dominated this area of research, but in order to understand the process of adaptation over time, longitudinal studies are needed. Introduction When a child with a disability is born, parents have to face their child s diagnosis and make adjustments in their caregiving and in their expectations. Families of children with disabilities face unique stressors and demands over time (Lin, 2000). Evidence suggests that there is a considerable variation in how caregivers adapt to these stressors and demands (Raina et al., 2004).While some parents of children with developmental disabilities perceive their family situation as not very stressful, others experience life as difficult and more negative (McCubbin & McCubbin, 1992). But why do some families succeed, while others have difficulty in managing the situation related to the rearing process of the child with a disability? Interesting in this respect is the focus on the process of adaptation, which can be defined as the ability of a marital/family system to change its power structure, role relationships and relationship rules in response to situational and developmental stress (Olson, Sprenkle, & Russel, 1979). Thus, while many studies show that, in general, parents of children with disabilities experience higher stress levels (Miller, Gordon, Daniele, & Diller. 1992; Sloper & Turner, 1993; Hauser-Cram et al., 2001; Smith, Oliver, & Innocenti, 2001), this is not necessarily related to lower levels of family adaptation (Cadman, Rosenbaum, Boyle, & Offord, 1991; Hauser-Cram et al., 2001). Information about the way and the extent to which families of children with cerebral palsy (CP) adapt to that situation is of high importance for daily practice. If professionals are able to identify families at risk for adaptation problems, they might be able to provide services that are adjusted to the needs of the family. To gain a deeper insight in this topic, a literature search was performed on the process of adaptation of parents with a child with CP and on factors related to this process. 18

19 Methods A literature search was performed using the MEDLINE and PsychINFO databases. These databases were searched from their date of release to the end of TheMesh or Thesaurus terms adaptation OR adjustment OR coping OR stress were used to find articles on both the process of adaptation and the state of stress. The second step was to search the databases using the Mesh or Thesaurus terms family OR parent OR social support. In the third step, the above results were combined with the term cerebral palsy. Only articles in English were included. They were examined with respect to (i) the type and purpose of the study, (ii) study sample, (iii) variables and instruments and (iv) results on adaptation and stress of the parents. Results The literature search resulted in 22 articles (see Table 2.1 for an overview of the purpose, population, variables and measures of these studies). Most of them (20) were crosssectional studies, in which factors related to stress, well-being and/or coping were studied. Only two longitudinal studies were found. The results are arranged in three categories: child-related factors, parent-related factors, and contextual factors, i.e. related to external support. Finally, results related to stages of family life are described. Chapter 2 Parental adaptation in children with CP: a review Child-related factors In five studies, parents of children with CP were compared with parents of typically developing children. In four studies, it was concluded that mothers of children with CP experience higher stress levels or lower levels of mental health than mothers of typically developing children (Molteno & Lachman, 1996; Ong Afifah, Sofiah, & Lye, 1998; Florian & Findler, 2001; Britner, Morog, Pianta, & Marvin, 2003). This difference was not found in one study where mothers of preterm children were compared with those of typically developing children (Lambrenos, Weinling, Calam, & Cox, 1996).When comparing stress levels of mothers of children with CP with general populationbased norms, relative high stress levels or low levels of mental health were found in four studies (Wallander, Varni, Babani, Banis, & Wilcox, 1989; Mobarak, Khan, Munir, Zaman, & McConachie, 2000; Wiegner & Donders, 2000; Manuel et al., 2003). One study concluded that the average level of parenting stress of a group of parents of children with CP was just below the general level of clinical concern (Weiss, Marvin, & Pianta, 1997). Wiegner and Donders (2000) reported that parents of children with CP experience more stress than those of children with spina bifida and limb deficiencies. Furthermore, parents of children with CP and health impairments seem to experience more stress related to physical limitations than those of children with Down syndrome (Weinhouse, Weinhouse, & Nelson, 1992). Others did not find differences in stress levels of mothers of children with different kinds of disabilities (Saddler, Hillman, & Benjamins, 1993; Molteno & Lachman, 1996). Besides the diagnosis itself, the severity of the disability in terms of the level of independent functioning in daily life was found to be an important predictor of maternal depression (Ong et al., 1998; Baird, McConachie, & Scrutton, 2000; Button, 19

20 Chapter 2 Parental adaptation in children with CP: a review Table 2.1 Reviewed studies Study Type Purpose Population Variables and measures Baird et al. (2000) C To investigate parental satisfaction with the diagnosis of CP of their child 107 parents of children with mild, moderate, or severe CP Child age: months Satisfaction with the disclosure of the diagnosis with respect to structure, manner and information (semi-structured interview) Demographic information (maternal education, employment status, parental ethnicity) Depression (Edinburgh Postnatal Depression Scale) Coping ( ways of coping inventory) Britner et al. (2003) C To find out whether marital functioning, need for support, parental stress and demographic information differs according to child diagnosis 87 mothers of children with severe or mild CP, or no medical diagnosis Child age: months Marital Functioning (Dyadic Adjustment Scale; DAS) Need for support (Support Functions Scale; SFS-Short Form) Helpfulness of Support (Family Support Scale; FSS) Parenting Stress (Parenting Stress Index; PSI Short Form) Button et al. (2001) C To examine male partner s involvement in caregiving and the relation between the male partners support and maternal parenting stress Florian & Findler (2001) C To investigate the relationships among the level of stressful life events, maternal psychological resources, and social support networks, and their contribution to mothers mental health and marital adaptation Hirose & Ueda (1990) C To investigate the reaction of parents on the diagnosis of their child with CP, crisis periods, social support and the roles of both parents in raising their child 64 (two-parent) families raising children with moderate or severe CP, or no medical diagnosis Child age: months 160 mothers of children with CP or no medical diagnosis Child age: 3 7 years 40 parents of 28 children with CP Child age: years The perceived effects of raising a young child on the task division and coping mechanisms of parents (semi-structured Interview) Assistance from the caregiving partner with tasks and problems (Inventory of Social Support; ISS) Overall helpfulness of the partners (Family Support Scale; FSS) Stressful life events (Family Inventory of Life Events and Changes) Mothers Self-esteem (Rosenberg Self Esteem Scale) Self Mastery (Self Mastery Scale) Social Support (Social Support Network List) Psychological adaptation (Mental Health Inventory) Familial and marital adaptation (Evaluating and Nurturing Relationship issues Communication and Happiness Scale) The social, mental and physical situation of parents, the process of acceptance and the important persons who supported parents and the share of fathers in the raising of the child with CP (semistructured interview) 20

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