Early Intervention in Unilateral Cerebral Palsy: Let’s Listen to the Families! What Are Their Desires and Perspectives? A Preliminary Family-Researcher Co-Design Study

Abstract

Cerebral palsy (CP) is a clinical diagnosis based on a combination of clinical and neurological signs, which occurs between the ages of 12 and 24 months. Cerebral palsy or a high risk of cerebral palsy can be accurately predicted before 5–6 months, which is the corrected age. This would allow the initiation of intervention at an early stage. Parents must be more involved in the development and implementation of the early therapy, increasing opportunities for parent–child interaction. The aim of this study was to learn from the perspectives of families with children under 12 months with unilateral cerebral palsy (UCP), what ingredients (barriers and facilitators) should be involved in early intervention so that we could co-design (researchers and families) a multidisciplinary guideline for a global intervention addressed to the needs of the child and the family. Semi-structured interviews were conducted at a time and venue convenient for the families. A total of ten families with experience in early intervention were invited to attend the interview with open questions: (1) What components should early intervention have for a baby diagnosed with UCP? (2) What components should early intervention have for the family? (3) What should the involvement of the family be in early intervention? (4) What barriers included in early intervention should be removed? From the data analysis, three key topics emerged and were subsequently named by focus group participants: (1) UCP early intervention components, (2) family involvement in early intervention of UCP, and (3) removing barriers and creating facilitators within early intervention. The participation of the families (mothers) in the co-design of the necessary ingredients within the scope of a multidisciplinary early intervention guide aimed at children with UCP under 12 months allows learning about their reality and not that of the therapist. The following list highlights the present barriers as perceived by the parents: intervention as spectators, therapeutic goals, clinic environment, and lack of empathy, and the possible facilitators determined by the parents during the implementation comprised teamwork, the family’s goals, motivation during the intervention, and learning at home. Thus, an early intervention program to improve global functionality should address family involvement through multidisciplinary coaching and the modification of the environment, encouraging family goals and family support through the family–therapist team.

Efficacy of Robot-Assisted Gait Therapy Compared to Conventional Therapy or Treadmill Training in Children with Cerebral Palsy: A Systematic Review with Meta-Analysis

“…Once children receive a diagnosis of CP it is necessary to carry out an early care treatment adapted to the characteristics of their pathology. This treatment will be provided by clinicians, parents or professional caregivers during their lifetime [97]. Physiotherapybased conventional approaches and locomotor training using treadmills are the most usual methods administered for the recovery of gait, balance, gross motor functional and independence in these patients.…”

A Review on Recent Advances of Cerebral Palsy

“…Early intervention programs are the most Oxidative Medicine and Cellular Longevity essential component of the management of CP as it addresses the disease process at the earliest and helps in early neuroplasticity of the brain [36]. Two trials, namely, GAME (goals, activity, and motor enrichment) and REACH (rehabilitation early for congenital hemiplegia), are under investigation in Australia to establish evidence for early intervention in children with CP [37]. Addressing functions like physical issues, cognition, communication, eating and drinking, vision, and sleep helps in improving the overall health of the child, and cooperation of the family and environment modification are the major factors for improve-ment [38].…”

“…This paper focuses on early diagnosis and treatment to be an effective management strategy for CP. It also discusses various techniques of management like oromotor stimulation, deep brain stimulation, and functional classification of CP children [37].…”

Shall we start? Ready, set, go! Toward early intervention in infants with unilateral cerebral palsy. A randomized clinical trial protocol

“…The latter pattern of reorganization is associated with poorer hand function and often the presence of pronounced mirror movement of reorganizations. 7 , 8 Thus, it is crucial to start an early intervention in UCP because, on one hand, it will improve the functionality of the affected upper limb, but also to include the parents in the intervention. 9 …”

“…In this sense, it is necessary to listen to families to make a correct design of early intervention in infants and young children with UCP, in a way that facilitates the development of skills in the specific family context, being the promoters of therapy. 8 …”