Parents of children born prematurely and diagnosed with cerebral palsy experience cumulative emotional burden and more distress when transitioning their child from neonatal care to developmental and rehabilitative services.
That finding, a study published in the journal Developmental Neurorehabilitation, revealed that despite family-centered practices used, additional interventions are still warranted to help parents during this difficult journey.
The study is titled “A whole new world: a qualitative investigation of parents’ experiences in transitioning their preterm child with cerebral palsy to developmental/rehabilitation services.”
A team led by researchers at the University of Toronto conducted interviews with 18 parents of children born preterm and diagnosed with cerebral palsy. The interviews were performed to collect in-depth personal stories with an integrated view on the parents’ journeys of moving their children from neonatal support services to developmental and rehabilitation services.
“To date, the experiences of mothers and fathers undergoing this transition journey remain unknown and undocumented,” researchers wrote in the study. They believe that “a deeper understanding of the parents’ perspective” is an important contributor to improve family-centered strategies to aid the “transition, mitigate distress, and support parenting health and well-being.”
According to parents’ answers, the transition of services was an emotionally stressful journey. They described it collectively as that of entering a “whole new world’”in which they all shared three common themes of not knowing “what to expect,” seeking to “feel supported,” and emotionally and physically “getting there.”
What to expect?
During the first stage of the transition parents reported they had similar feelings as those experienced right after a cerebral palsy diagnosis. Their main concern was focused on the hope for their child’s future.
The parents also noted differences in cultures of care related to new types of services and roles, as well as in therapy strategies and resources, with which they felt they were unprepared to cope.
“The ‘what to expect’ theme shed light on the need for a continuous flow of information to parents rather than not knowing so that they continue to learn about their child and begin to cope and adjust to their new role as a parent of child with special needs,” the researchers said.
Physician, family support
Several studies have reported the importance of having the support of the healthcare team during the early stages upon diagnosis for parents of infants with cerebral palsy. Parents felt this type of support also was important during the transition toward their child’s rehabilitation stage.
Healthcare practitioners were identified as a key source of informational guidance and emotional support because of their knowledge of the healthcare system and experience providing care to children with cerebral palsy.
Sometimes, parents experienced more comfort in seeking support from peers than from their family and friends. These connections were of utmost importance to parents, acting as the most preferred source of emotional, informational guidance, and practical/instrumental support.
Transition from neonatal to developmental/rehabilitation services often led to feelings of fear, anxiety, depression, psychological distress and stress. This was in part triggered by memories of the earlier transition experiences, similar to a post-traumatic stress disorder.
But parents also reported that the feeling of ending a trusting relationship with the neonatal care teams contributed to the increased emotional distress.
“It is critically important to address this finding because child development is highly dependent on the mental health and emotional well-being of parents,” the researchers wrote.
Before entering developmental/rehabilitation services, parents described experiencing wait lists that created limited access to, and knowledge about, services to help their child. Being physically unable to access or attend services was found to amplify parents’ feelings of frustration and a sense of guilt.
The researchers believe there are four areas that need to be improved:
- raising awareness of parents’ transition experiences;
- improving healthcare practitioners’ understanding of practices and cultures of care of other neonatal and rehabilitation services;
- developing shared approaches to help improve parents’ experiences on CP-related services, resources, and family life, and;
- creating meaningful connections with peer-to-peer support.
A collaborative work between family, researchers, and healthcare practitioners should be conducted to develop interventions focused on those areas in need of improvement, the researchers said.