When I am no longer alive – Dr Hemant Thakkar – PhD Thesis

When I am no longer alive – Dr Hemant Thakkar – PhD Thesis

Parenting a disabled child is reported time and again in numerous studies to be far more complex and stressful than raising a non-disabled child. The issues faced by parents in raising a disabled child as reported in the literature include:

  • difficulties in managing work–life balance;
  • feelings of losing their own identity other than being a parent of a disabled child;
  • stress in relationship with their partners/other family members;
  • loss of friends and feelings of isolation;
  • poor health outcomes; and
  • worries about what would happen to their child if something happened to them.

Thus, the question, “What will happen to my child when I am no longer alive?, often troubles many parents of disabled children. However, for a majority of the ageing parents of adult children with high and complex needs (HCN), this is perhaps the most worrisome question as, even within the disability population, people with HCN are considered to be the most vulnerable group. Their increased vulnerability compared to other disability groups could be attributable to the nature of the support they require (including intimate personal care), in association with deficits in cognitive and
communication abilities hindering them in speaking up and fighting for their own rights.

Their complete reliance on others for most aspects of their everyday lives also makes them easily exposed to various kinds of abuse and neglect.

This is an excerpt from the PhD Thesis by Dr Hemant Thakkar.  Copies of his full publication can be found below:

When I am no longer alive – thesis summary (Word)

When I am no longer alive – thesis summary (PDF)

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