How Can We Support the mental health of children and youth with spina bifida and hydrocephalus? Insights from research during the COVID-19 pandemic

By Revi Bonder, Amy C. McPherson, Andrea Snider

Whether it’s struggling with fear or uncertainty about our own health and/or the health of loved ones, worrying about employment and finances, or feeling socially isolated, COVID-19 has affected the mental health of many of us. For young people with spina bifida and/or hydrocephalus (SBH), navigating typical life changes such as becoming more independent and forming strong relationships with people outside their home has been extremely challenging during Covid-19. At Holland Bloorview Kids Rehabilitation Hospital, we have been trying to find out how healthcare professionals (HCPs) can help children and youth with SBH with their mental health as part of providing good quality healthcare.

What Did We Do?

We first looked for published research that described how HCPs can best talk about mental health with youth with SBH. Unfortunately, none was focused on youth with SBH, so we looked at research for children/youth more generally. After we summarised what the research said, we asked parents of children with SBH to complete an online survey telling us how the pandemic had affected their child’s mental health and whether they felt that the research we found applied to children with SBH.

What Did We Find?

Many parents told us that the mental health of their child with SHB was really affected by the pandemic. Most parents rated their child’s mental health as ‘very good’ before COVID-19, but the majority felt that their child’s mental health was only ‘fair’ during the pandemic. Because of this, parents felt that mental health support from their HCPs was really important.

Parents agreed with what we found in the research: Having a trusting relationship between the child, parent and HCPs is really important. Parents agreed that HCPs should give children some control, by asking whether they would like to talk about their mental health and who they would like to be part of that discussion. HCPs should also help parents to understand their child’s mental health more so they can answer questions. Parents also thought that HCPs should use different forms of communication (such as drawings or pictures) depending on how old the child is and what they are most comfortable with.

What Does This All Mean?

Mental health plays an important part in overall well-being. Covid-19 has shown how important it is for HCPs to be able to talk about mental health with children/youth with SBH and their parents. Research and feedback from parents show that HCPs need to create trusting relationships so that children feel comfortable to talk about any mental health concerns. It can be helpful to give them some control over when and with whom to talk about any mental health issues. HCPs can use these suggestions to make conversations about mental health part of regular healthcare for children and youth with SBH.

The research team would like to thank all the parents who participated in their study. The research team would like to acknowledge Shauna Beaudoin, Arbella Yonadam, Sarah Keenan and Dilshad Kassam-Lallani  for their help with this study. This work was supported by generous donors to the Holland Bloorview Foundation. For more information about this study, please contact Amy McPherson, PhD, Senior Scientist, Holland Bloorview Kids Rehabilitation Hospital.