Dr Chua (centre) with collaborators Dr Susan Mathers and Dr Katya Kotschet from Calvary Healthcare Bethlehem |
Progressive neurological diseases (PND) encompass a broad and complex group of diseases such as Motor Neuron Disease (MND), Huntington’s disease (HD), Parkinson’s disease, Multiple Sclerosis (MS).
“All PND are currently incurable and fatal, some within a few years from initial diagnosis,” said Dr Chua. “However, they have different aetiologies, symptoms and trajectories and some diseases such as HD have a clearly familial link.”
Dr Chua said that all these diseases lead to significant physical disability and many are associated with cognitive decline.
Families of individuals with a PND play an essential supportive role from diagnosis to the terminal stage.
“Research has shown that individuals who draw on social support to deal with their neurological illnesses adjust better than those who are reliant on external supports,” added Dr Chua.
“Family relationships, roles and responsibilities can change as a result of and with disease progression and a more proactive family-centred approach in the management of PND can potentially minimise family burden and burnout and maximise social support for the individual.”
Dr Chua and her colleagues aim to identify patient, family members and disease variables that are highly correlated to family dysfunction and to also determine whether the patient health status and quality of life and family member experience are linked.
“Knowledge of variables which can impact on family relationships can assist in the identification of high risk families.”
The results of this study will help inform which families of individuals with PND have higher levels of family dysfunction and could potentially benefit from family focused interventions such as family assessments, family education and family therapy and also inform further research into appropriate family focused interventions.
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