Parents' reactions to the diagnosis of cerebral palsy: associations between resolution, age and severity of disability

Background   For parents, receiving a diagnosis, typically in early childhood, that their child has cerebral palsy may conjure up high distress and anxiety. Resolution of these initial reactions may help parents to focus on the challenges and needs of their children. Aims of the study were to test whether parents of older children displayed resolution more often than parents of younger children, and whether parents of children with less severe cerebral palsy also showed more resolution.
Method   Resolution of reactions to diagnosis was assessed with the Reaction to Diagnosis Interview, in a clinic-based sample of 255 parents of children with cerebral palsy aged between 1.4 and 17.3 years. Physicians rated motor ability using the Gross Motor Function Classification System.
Results   Overall, the responses of 81.6% of the parents were predominantly indicative of resolution. Unresolved reactions were significantly more often found among parents of younger children and parents of children with more severe motor disabilities. Among parents of teenage children, resolution was more often apparent from a focus on action to better the lives of their children, whereas in parents of younger children, it was more apparent from their focus on constructive thoughts and information seeking.
Conclusions   Given time, the large majority of parents may resolve their reactions to the diagnosis that their child has cerebral palsy. Parents of the most severely affected children may need specific support which, given the age trends, might be aimed at different resolution processes for parents of younger and older children.     

Maternal parenting stress and its correlates in families with a young child with cerebral palsy

Objective   To investigate factors predicting parenting stress in mothers of pre-school children with cerebral palsy.
Method   Eighty mothers and children participated. Mothers completed the Parenting Stress Index (PSI) and the following measures of family functioning: family support, family cohesion and adaptability, coping strategies, family needs and locus of control. Children were assessed using the Griffiths Scales and the Gross Motor Function measure. The child's home environment was assessed using Home Observation for Measuring the Environment.
Results   Mothers had higher mean total PSI scores than the means for the typical sample; 43% had total PSI scores above the threshold for clinical assessment. Cluster analysis demonstrated five distinct clusters of families, more than half of whom were coping well. High stress items were role restriction, isolation and poor spouse support, and having a child who was perceived as less adaptable and more demanding. Lower stress items indicated that this sample of mothers found their children emotionally reinforcing and had close emotional bonds. Regression analysis showed that the factors most strongly related to parenting stress levels were high family needs, low family adaptability and cognitive impairment in the child.
Conclusions   The results confirmed the individuality of families, and that individual characteristics of coping and feeling in control, together with family support and cohesion, are associated with variation in amount of stress experienced in parenting a child with cerebral palsy.     

Children's and parents' beliefs regarding the value of walking: rehabilitation implications for children with cerebral palsy

Background Walking for children with cerebral palsy (CP) has physiological and functional benefits, but also holds symbolic significance that largely remains unexplored. The aims of this pilot study were to describe beliefs about the value of walking held by children with CP and their parents, and to examine how these beliefs inform rehabilitation choices and perceptions of ‘success’. Methods A critical qualitative design was employed. Six parents and six children with CP (Gross Motor Function Classification System III or IV, aged 9 to 18 years) each participated in a private interview. Analyses examined the relationship between dominant social beliefs regarding walking and participants' accounts. Results Parents' accounts revealed that all adopted a stance of doing something/trying anything as part of being a ‘good parent’ and maintaining hope. Tapering of walking interventions contributed to feelings of guilt and doubt. Children primarily viewed walking as exercise rather than functional. Their accounts also demonstrated how they internalized negative attitudes towards disability and judged themselves accordingly. Conclusions The results of this pilot study provide provisional evidence regarding how dominant social values regarding walking and disability are taken up by parents and children. They suggest that rehabilitation programmes need to consider how they may unintentionally reinforce potentially harmful choices, and how best to engage families in discussions of their evolving values and treatment priorities. Further research is needed with a larger sample.     

脑瘫患儿早期诊断和早期干预的探讨

目的：探讨对脑瘫患儿进行早期诊断、早期干预的措施和方法。方法选择铜川职业技术学院校外实训基地铜川市人民医院,2010年7月至2013年7月收治的94例脑瘫患儿为研究对象,根据患病年龄大小将其分为甲组（出生至6个月）、乙组（7个月至1岁）和丙组（1岁至5岁）。对3组的临床资料进行回顾性分析,并对3组患儿进行综合性康复治疗,治疗1个疗程后进行疗效评价。结果3组进行治疗后,甲组和乙组有效率均高于丙组（χ2值分别为10．333和4．585,P＜0．05）;甲组治疗效果为“优”者较之丙组的比率高（χ2＝5．905,P＜0．05）,丙组治疗效果为“差”者的比率高于甲组（χ2＝4．026,P＜0．05）。3组经过治疗后,甲组家属对治疗结果满意率高于丙组（χ2＝8．952,P＜0．05）,而丙组家属对治疗结果不满意率高于甲组（χ2＝7．891,P＜0．05）。结论对脑瘫患儿进行早期诊断,实施早期干预,能够使患儿病情得到有效康复,明显减少患儿和家属身心痛苦。     

Family needs of parents of children and youth with cerebral palsy

Background Understanding the needs of families of children and youth with cerebral palsy (CP) is important for family‐centred services. The aims of this study were to identify: (1) differences in the number and types of family needs expressed by parents based on the age and gross motor function level of their children with CP; (2) the most frequent family needs; and (3) needs that differ on gross motor function level. Methods A total of 501 parents (77.6% mothers) of children and youth with CP completed a modified version of a Family Needs Survey and a demographic questionnaire. Children's gross motor function level was classified using the Gross Motor Function Classification System. Results Total number of family needs differed based on gross motor function level (P < 0.001) but not age. Parents of children/youth who use wheeled mobility expressed the highest number of family needs, while parents of children/youth who walk without restrictions expressed the fewest needs. Family needs for Information (P= 0.001), Support (P= 0.001), Community Services (P < 0.001) and Finances (P < 0.001) differed based on children's gross motor function level. Over 50% of parents expressed family needs for information on current and future services, planning for the future, help in locating community activities and more personal time. Parents of children and youth who use wheeled mobility were more likely to express the need for help in paying for home modifications, equipment, services and locating sitters, respite care providers and community activities. Conclusions The gross motor function of children/youth with CP has implications for collaboration with families to identify needs and co‐ordinate services. Health professionals have a role to assist families with information needs and locating community services and leisure activities. Family needs for future planning suggest that health professionals should assist families to prepare for key periods in the lives of their children with CP.     

Comparison of the prevalence and impact of health problems of pre-school children with and without cerebral palsy

Background The range of health problems associated with children with cerebral palsy (CP) is well documented in the literature; however, the existing data are often either reported for samples of children with all types of CP, or stratified by typology of motor disorder, rather than using the Gross Motor Function Classification System (GMFCS), which has been shown to be the most reliable way of classifying children with CP. Furthermore, availability of research on pre‐school‐aged children (under 5 years) is sparse. The aim of this study is to compare the prevalence and impact of health problems in pre‐school children with and without CP, stratified by the GMFCS. Methods Parents of 430 pre‐school‐aged children with CP (243 boys, 187 girls; mean age = 3 years 2 months, SD = 11 months) and 107 typically developing (TD) children (56 boys, 51 girls; mean age = 3 years 4 months, SD = 11 months) participated. Using the consensus definition of CP and the World Health Organization's International Classification of Functioning, Disability and Health, a parent survey was developed to assess the prevalence and impact of 16 health problems. The measure demonstrates good test–retest reliability (ICC > 0.80) and discriminant validity across GMFCS levels (P < 0.001). Results Both the prevalence and impact of health problems is greater in children with CP compared with TD children (P < 0.001). The number and impact of health problems increase with ascending GMFCS level (P≤ 0.01), except for the impact of health problems between groups GMFCS I and GMFCS II/III (P= 0.19). Children with CP have an average of between 3.4 and 6.7 health problems, compared with fewer than one in TD children. Conclusions Service providers working with pre‐school‐aged children with CP need to consider health problems and their impact when planning care.     

Two sides of the mirror: parents' and service providers' view on the family-centredness of care for children with cerebral palsy

Background In order to best meet the needs of both families and their children with cerebral palsy, many rehabilitation service providers have adopted a family‐centred service (FCS) approach. In FCS parents are seen as experts on their child's needs, and the family and professionals collaborate in the rehabilitation process. However, parents and service providers might look at FCS from different points of view, i.e. look into the mirror from two different sides. The objective of this study was to explore the degree to which parents experience the service as being family‐centred and to which extent the service providers experience their service provision as family‐centred. Methods A translated version of The Measure of Processes of Care 20 (MPOC‐20) questionnaire was used to evaluate parents' experience of FCS, and a Measures of Processes of Care for Service Providers (MPOC‐SP) questionnaire was used to evaluate the FCS provided by professionals. Parents visiting two university hospital neuropediatric wards (n= 67) during a 2‐month period and who were willing to participate received the questionnaire. Also the service providers working on the same wards (n= 49) were invited to participate. Results A total of 53 families and 29 service providers completed the questionnaires. Both parents and professionals generally rated the FCS positively. General information was rated lowest and respectful treatment the highest by both parents and professionals. The results revealed that written information about the child's condition, the possibility to choose when to receive information, and contact with other families in the same situation are areas in need of improvement. Conclusions The possibility to regularly evaluate services both from the families' and the professionals' perspectives should be part of quality development. Providing general information is a challenge for all service providers. The MPOC questionnaires can be used to highlight important areas of improvement in FCS.     

Profiles of family needs of children and youth with cerebral palsy

Background To identify profiles of family needs of families of children and youth with cerebral palsy (CP), and determine whether profile membership is related to child, family and service characteristics. Methods Participants were mostly mothers (80%) of 579 children and youth with CP. A family member completed modified version of the Family Needs Survey and questionnaires about their child, family and services. Research assistants determined the Gross Motor Function Classification System levels. K-means cluster analysis identified profiles of needs. Cluster membership was analysed to examine differences in clusters based on selected characteristics. Results Four profiles of needs were identified: Low needs, Needs related to community and financial resources, Needs related to child health condition and High needs. Profile membership was differentiated based on child/youth gross motor function, adaptive behaviour, family relationships, family income, access and effort to co-ordinate services. Conclusion Despite heterogeneity among individuals with CP and their families, four profiles of family needs were identified. In total, 51% of families had low needs suggesting that they are effectively managing their children's health conditions while 11% of families had high needs that may require high levels of services and supports. Service providers are encouraged to partner with families, provide anticipatory guidance and co-ordinate services.     

Systematic review of the efficacy of parenting interventions for children with cerebral palsy

This systematic review aims to evaluate the efficacy of parenting interventions (i.e. behavioural family intervention and parent training) with parents of children with cerebral palsy (CP) on child behavioural outcomes and parenting style/skill outcomes. The following databases were searched: Medline (1950-April 2010), PubMed (1951-April 2010), PsycINFO (1840-April 2010), CINAHL (1982-April 2010) and Web of Science (1900-April 2010). No randomized clinical trials of parenting interventions with parents of children with CP were identified. Three studies were identified that involved the examination of a targeted parenting intervention via a pre-post design. Interventions utilized included the implementation of parenting interventions in conjunction with behavioural intervention and oral motor exercises for children with CP and feeding difficulties, the Hanen It Takes Two to Talk programme and a Functional Communication Training programme for parents. All studies found changes in relevant child behavioural outcomes. The studies reviewed suggest that parenting interventions may be an effective intervention for parents of children with CP. However, the current research is limited to pre-post designs of targeted parenting interventions (e.g. parenting interventions focused upon communication). A randomized controlled trial of parenting interventions for families of children with CP is urgently needed to address this paucity in the literature and provide families of children with CP with an evidence-based intervention to address child behavioural and emotional problems as well as parenting challenges.