"Devastating Diagnosis" - Supporting families during diagnosis helps their family quality of life

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1. Please give a summary of your research.

For most parents having a child is a time of immense joy and hope for the future. No parent expects to have a child with disability however when this does happen, parents go through unexpected changes to their planned trajectory. Having a child with disability has an influence on parents, and on family quality of life (FQOL). My PhD research on FQOL included perspectives of 122 parents of children with disability.

One strong finding from my PhD was that the time of diagnosis was the most difficult and devastating time for families. Parents expressed resentment with the attitude of the health professionals at this time, and a lack of support and information about their child's diagnosis. Many parents had no previous experience of disability and were left on their own to manage their responses and reactions to the diagnosis. Both the fathers and mothers in the interviews felt "devastated" and reported that they were worried about mental health issues of their spouses at this difficult time.

The first intervention that a child receives after diagnosis comes from his/her parents. Evidence supports providing early intervention during the critical growth period (0-5 years), because the immature brain is making new connections and learning at a rapid pace. However if the parents feel devastated it can impact their mental health and indirectly impact the development of their child's progress.

Following my PhD findings, we were able to fund a pilot program to provide support and information sessions to families at the time of diagnosis with a paediatrician and parent support worker to address some of the fears and anxieties that parents experience around the diagnosis. Further funding for this project will help with continuing and expanding this project and this research and improving the family quality of life of families experiencing childhood disability.

2. Please include any additional details you would like to share


Here are some quotes from participants that help in understanding how they felt at the time of diagnosis:


" I suppose early days were more the not knowing. You know ... your mind’s running wild and your thoughts run away with you of what the possibilities could be or the lack of possibilities for our daughter...but you know hearing the diagnosis was obviously stressful and sad... just cause neither of us wanted to really say the effects that it had had on us, we felt humiliated and struggled..."


"It was part of that whole early experience … the process upon diagnosis… some health professionals who were especially oblivious to, even factoring in ... and I know this is a quality of life matter… the sort of mental health of parents. And so it degraded her [wife] quality of life"


"Actual parental mental health is probably paramount actually…, because no matter what the diagnosis, it’s always gonna be devastating for the parents no matter what ..."


" I suppose early days were more the not knowing… And I suppose that those days were probably much harder because you’ve got the worst-case scenario..."


"Yeah and so it’s a bit of a vicious cycle… you lose your patience and are exhausted and um… yeah so I would say, that is the time when I have a bad quality of life, and that’s the time when I need the support..."

Comments

4
Raj Menon
over 1 year ago

This is an important area of research. Parents, often being the primary care givers, are typically the most important resource for supporting a child who has just received an adverse diagnosis. Supporting the primary care giver is therefore, intuitively, a key step in supporting the child.

Vandana Kembhavi
over 1 year ago

We as parents to a CP boy has gone through the experience 20 years ago and it was tough. It changed our life, we will be happy if parents get the support most needed. Thanks.

Jenny Rijo
over 1 year ago

Being a parent is an awesome feeling but it comes with so many questions and fear... and when this feeling is layered with a diagnosis of something you have no idea about with no support system, becomes a crazy period. Good luck with this research and initiative...

Nair Maya
over 1 year ago

This is something that We see Often when dealing with patients families . Mental well being of the family as a whole is very crucial during the early phase of diagnosis and treatment. A robust immune response is important to overcome the problem and studies have shown that high stress levels affect your immunity.