CJC Pediatric and Congenital Heart Disease<\/a>. Along with family members, the researchers also interviewed health-care providers, including pediatric cardiologists, cardiac care nurses, social workers, exercise physiologists and echocardiographers.<\/p>\n\u201cCaring for children with CHD is a challenging experience for parents, who must juggle managing finances and complex childcare, along with the emotional toll of their child\u2019s diagnosis,\u201d explains Nemes, a fourth-year medical student. \u201cThese parents face numerous hurdles as they learn to care for their children and must lean on a variety of personal and clinical supports to provide for their family\u2019s needs.\u201d<\/p>\n
While there are support resources for parents\u2014doctors and nurses, community resources, family, friends, neighbours and peers with children also with chronic disease\u2014there remain questions as to when and how to best incorporate these supports into the parents\u2019 lives.<\/p>\n
And this raises a key finding of the study. Some parents initially turned down offers of support\u2014a decision they later regretted. As a child grows, their medical needs will change. Dr. Voss says there are many different stages of the journey where parents might find a different need for support. However, it may no longer be available to them.<\/p>\n
\u201cCaring for children with CHD is a challenging experience for parents, who must juggle managing finances, complex childcare, and the emotional toll of their child\u2019s diagnosis.\u201d<\/p>\n
Dylan Nemes<\/p>\n
\u201cAcross all parents, there was the emotional side of raising a child with CHD,\u201d says Dr. Voss. \u201cThere was a consensus that diagnosis, surgery and ongoing medical care were a large source of trauma. Whether it occurred prenatally or postnatally, diagnosis was always a shock.\u201d<\/p>\n
There were several common themes related to anxiety for parents. Many said they often felt overwhelmed as they needed to advocate for themselves and their children to stay well informed. Families not living near BC Children\u2019s Hospital in Vancouver said they struggled with limited parental supports and additional expenses. Study participants also reflected on the enormity of the education and communication required to care for their child with CHD.<\/p>\n
One of the clinicians who participated in the study noted that parents are often not well supported, because health-care funding is \u201cpatient-centric\u201d\u2014meaning the care and attention is focused on the child, not the parents.<\/p>\n
While the study offers insight into the complexity of caring for children with CHD, the researchers also hope to highlight the need for change. They advocate for shifting how and when information is communicated to parents. They suggest that introducing support mechanisms\u2014to help process trauma and cope with caregiving stress\u2014will improve the experience of parents.<\/p>\n
Many parents also worried about how much physical activity their child should participate in. They were also concerned about when to introduce an activity routine into the young child\u2019s daily routine.<\/p>\n
\u201cWe explored some existing barriers and potential solutions to the issue of low physical activity in children with CHD, with a focus on introducing physical activity earlier and more often,\u201d says Nemes. \u201cWe are hopeful our findings can inform health-care professionals, advocacy groups and government agencies on providing education, emotional support, resources and physical activity counselling more effectively.\u201d<\/p>\n
A version of this story was originally posted on the UBC Okanagan website<\/a>.<\/p>\n","protected":false},"excerpt":{"rendered":"Dylan Nemes, a fourth-year UBC medical student, co-authored a paper with Dr. Christine Voss describing how parents of…\n","protected":false},"author":2,"featured_media":1959,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[10],"tags":[2667,49,48,549,84,2668,44],"class_list":{"0":"post-1958","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-health","8":"tag-byline-date-only","9":"tag-ca","10":"tag-canada","11":"tag-education","12":"tag-health","13":"tag-homepage","14":"tag-news"},"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/posts\/1958","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/comments?post=1958"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/posts\/1958\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/media\/1959"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/media?parent=1958"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/categories?post=1958"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/tags?post=1958"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}
![\"Dylan](\"https:\/\/www.newsbeep.com\/ca\/wp-content\/uploads\/2025\/07\/feature-student-doctors-dylan-1200x700-1-940x548.jpg\")
Dylan Nemes, a fourth-year UBC medical student, co-authored a paper with Dr. Christine Voss describing how parents of children with heart conditions also need support.<\/p>\n