Exploring Parents' Experiences and Needs During Disclosure of a Cerebral Palsy Diagnosis of Their Young Child: A Scoping Review

BACKGROUND: Parents often perceive the news that their child has cerebral palsy (CP) as overwhelming and shocking. They are at increased risk of parental stress and mental health problems, which in turn can affect the interaction between the parent and the child. Parental mental health outcomes are known to be affected by the process of disclosure of a diagnosis. In this study, we aimed to synthesize the current knowledge about parents' experiences and needs regarding communication during the disclosure of the diagnosis of their child with (or at risk of) CP. METHODS: A scoping review following the methodological steps outlined by the Joanna Briggs Institute was performed using PubMed, Embase, CINAHL and PsycINFO. We qualitatively explored parent-reported experiences and needs across included studies, using thematic analysis. RESULTS: A total of 19 studies were included. Six themes were identified, three in relation to experiences (i.e., preceding experiences and feelings, perceptions of the disclosure and emotional impact) and three in relation to needs (i.e., transparency in information, supportive attitude and having a say). Despite high variability across studies regarding parental needs, most studies reported the need for (i) honest and clear information, (ii) good communication skills amongst professionals and (iii) emotional and practical support after diagnosis. CONCLUSIONS: Our findings suggest that parents' experiences and needs in the period when their child's diagnosis of (high risk of) CP is communicated are highly variable, due to an interplay of personal and contextual factors. To facilitate good communication during disclosure, it is crucial that health care professionals assess and understand this complex process and consider parents' needs for open communication and autonomy in the process. Therefore, professionals need to attune to parents' needs and their individual preferences regarding conversations about their child with (or at risk of) CP

Development of expert consensus to guide physical rehabilitation in children and adolescents with acquired brain injury during the subacute phase

OBJECTIVE: To develop consensus among experts to guide physical rehabilitation in children and adolescents with acquired brain injury during the subacute phase. DESIGN: International Delphi study. METHODS: A 3-round online Delphi study was conducted with 11 international experts in rehabilitation for children and adolescents with acquired brain injury. The first round consisted of open-ended questions; the second and third round consisted of ranking 139 statements on a 5-point Likert scale. RESULTS: The panel reached consensus on 116/139 statements. Consensus was reached on the importance of age, pre-injury developmental stage and the clinical presentation of the child when determining content and focus of physical rehabilitation. In addition, consensus was reached on the importance of participation-focused interventions, and involvement of family members in goal-setting and therapeutic activities. Although dosage was deemed very important, no consensus was reached for determination of dose-response variables to suit and influence the child's needs. CONCLUSION: This study provides a framework for clinicians to design physical rehabilitation interventions in children with acquired brain injury in the sub-acute recovery phase. The promotion of physical activity in meaningful contexts and involvement of family members are considered as important components to optimize recovery

LEARN 2 MOVE 2-3: a randomized controlled trial on the efficacy of child-focused intervention and context-focused intervention in preschool children with cerebral palsy

<p>Abstract</p> <p>Background</p> <p>Little is known about the efficacy and the working mechanisms of physical and occupational therapy interventions for children with cerebral palsy (CP). In recent years a shift from a child-focused intervention approach to a more context-focused intervention approach can be recognized. Until now the evidence on the efficacy and the working mechanisms of these interventions for children with CP is inconclusive. This study aims to evaluate the efficacy and working mechanisms of two intervention approaches compared to regular care intervention in improving mobility and self-care skills of children (2-3 years) with CP and their families: a child-focused intervention approach and a context-focused intervention approach.</p> <p>Methods/Design</p> <p>A multi-centre, randomized controlled trial research design will be used. Ninety-four children with CP (Gross Motor Function Classification System (GMFCS) level I-IV; age 2 to 3 years), their parents, and service providers (physical and occupational therapists) will be included. During a period of six months children will receive child-focused, context-focused or regular care intervention. Therapists will be randomly assigned to deliver either a child-focused intervention approach, a context-focused intervention approach or regular care intervention. Children follow their therapist into the allocated intervention arm. After the six months study-intervention period, all participants return to regular care intervention. Outcomes will be evaluated at baseline, after six months and at a three months follow-up period. Primary outcome is the capability of functional skills in self-care and mobility, using the Functional Skills Scale of the Pediatric Evaluation of Disability Inventory (PEDI). Other outcomes will be quality of life and the domains of the International Classification of Functioning, Disability and Health - for Children and Youth (ICF-CY), including body function and structure, activities (gross motor capacity and performance of daily activities), social participation, environmental variables (family functioning, parental empowerment).</p> <p>Discussion</p> <p>This paper presents the background information, design, description of interventions and protocol for this study on the efficacy and working mechanisms of child-focused intervention approach and context-focused intervention approach compared to regular care intervention in mobility and self-care skills of children (2-3 years) with CP.</p> <p>Trial registration</p> <p>This study is registered in the Dutch Trial Register as NTR1900</p

LEARN 2 MOVE 0-2 years:effects of a new intervention program in infants at very high risk for cerebral palsy; a randomized controlled trial

Background: It is widely accepted that infants at risk for cerebral palsy need paediatric physiotherapy. However, there is little evidence for the efficacy of physiotherapeutic intervention. Recently, a new intervention program, COPCA (Coping with and Caring for infants with special needs - a family centered program), was developed. COPCA has educational and motor goals. A previous study indicated that the COPCA-approach is associated with better developmental outcomes for infants at high risk for developmental disorders. LEARN 2 MOVE 0-2 years evaluates the efficacy and the working mechanisms of the COPCA program in infants at very high risk for cerebral palsy in comparison to the efficacy of traditional infant physiotherapy in a randomized controlled trial. The objective is to evaluate the effects of both intervention programs on motor, cognitive and daily functioning of the child and the family and to get insight in the working elements of early intervention methods.Methods/design: Infants are included at the corrected age of 1 to 9 months and randomized into a group receiving COPCA and a group receiving traditional infant physiotherapy. Both interventions are given once a week during one year. Measurements are performed at baseline, during and after the intervention period and at the corrected age of 21 months. Primary outcome of the study is the Infant Motor Profile, a qualitative evaluation instrument of motor behaviour in infancy. Secondary measurements focus on activities and participation, body functions and structures, family functioning, quality of life and working mechanisms. To cope with the heterogeneity in physiotherapy, physiotherapeutic sessions are video-recorded three times (baseline, after 6 months and at the end of the intervention period). Physiotherapeutic actions will be quantified and related to outcome.Discussion: LEARN 2 MOVE 0-2 years evaluates and explores the effects of COPCA and TIP. Whatever the outcome of the project, it will improve our understanding of early intervention in children with cerebral palsy. Such knowledge is a prerequisite for tailor-made guidance of children with CP and their families.Trial registration: The trial is registered under NTR1428.</p

Perceptions of family participation among parents of children with cerebral palsy followed from infancy to toddler hood

Background. Little is known about the way parents of children with cerebral palsy (CP) perceive their involvement in family and personal life situations, also called 'family participation'. Purpose. To investigate the perception of family participation among parents of preschool children with CP. Method. Semi-structured interviews were used to describe how parents (n = 53) of children with CP (aged 18 months) perceive participation with respect to family activities and their personal activities. In addition, using a combined score of family and personal activities, we investigated the changes of parental (n = 36) perceived family participation over time (followed from 18 months onwards until 42 months of age). Results. At the child's age of 18 months, a substantial percentage of parents expressed a feeling of being restricted in their family activities (45%) or personal activities (53%). The longitudinal data show that over the 24-month follow-up significant more parents perceived to be restricted in family participation (p = 0.008; Cochran's Q test). Conclusions. A child with CP in a family may lead to parents perceiving restrictions in family participation. These restrictions arise early in the life of a child with CP and may become more prominent as the child grows older

Maternal resolution of grief in infants with varying medical conditions: Infant and dyadic outcomes, and implications for intervention

OBJECTIVE: This symposium explores the construct of maternal resolution of grief in infants with varying medical conditions, and highlights implications for intervention. We will demonstrate how maternal resolution of grief was explored in mothers of infants with prematurity and cerebral palsy, using the Reaction to Diagnosis Interview. Findings will be used to highlight potential opportunities to address maternal resolution of grief in a clinical intervention with dyads at risk. PAPER 1: Maternal Resolution of Grief Regarding Preterm Birth, Implications for Attachment Security: Prachi Shah, Melissa Clements, Julie Poehlmann. This study explored the association between maternal unresolved grief regarding preterm birth, quality of parent-child interactions, and infant-mother attachment security, and assessed 74 preterm infants a larger longitudinal study of high-risk infants. The association of maternal resolution of grief regarding preterm birth, and quality of infant-mother attachment was assessed using a relative risk ratio and multiple regression models. Maternal resolved grief regarding prematurity was associated with attachment security at 16 months after controlling for covariates (adjusted OR 2.94); maternal grief resolution and interaction quality were both independent predictors of attachment security. Results suggest that future research should explore screening for maternal grief resolution following preterm birth in pediatric practice. PAPER 2: Reactions to Diagnosis of Cerebral Palsy: Patterns of Resolution Across Development: Carlo Schuengel, Ingrid C.M. Rentinck, Marjolein Ketelaar, Jules Becher.This study explored the patterns of adaptation of parents to their children’s diagnosis of cerebral palsy (CP). The Reaction to Diagnosis Interview was given to 255 parents of infants, school age children, and teenagers with CP. In a subsample of 38 parents of infants, the interview was repeated after 1 year. A significant shift was observed from more cognition-focused patterns of resolution to strategies focused on addressing the needs related to the disabilities. Disability severity played a minor role. Results suggest that patterns of adaptation to their child’s diagnosis of CP may guide clinical interventions to parents with problematic grief resolution. PAPER 3 : Incorporating Reactions to Diagnosis With Couples with a Prenatal Diagnosis of a Congenital Malformation. Margot Hankel, Mirjam Oosterman, Christine Brouwer-Dudok de Wit, Carlo Schuengel. Individual differences exist in parents’ reactions to a diagnosis of a congenital malformation or disability in their child. Increasingly, couples receive such diagnoses prenatally. Prenatal interventions focused on the couple’s selfawareness about their reaction to diagnosis, while providing strategies towards resolution may assist in their adaptation to caring for their infant. This paper describes how the Reaction to Diagnosis Interview may be used as an intervention tool, to highlight representational diversity and change, foster coherence in emerging working models of their relationship with the infant, and to strengthen marital support. Case notes on first participants in an ongoing trial will illustrate the benefits and challenges of this approach