The Genetic Syndromes Stressors Scale is a questionnaire designed to be completed by parents/carers of people with rare genetic syndromes, especially those with additional intellectual disability. The items were developed from qualitative research in which parents were interviewed about their experiences of raising individuals with rare syndromes:
M., Hastings, R. P., Nash, S., Petalas. M., Oliver, C., Howlin,
P., Moss, J., Petty, J., & Tunnicliffe, P. (2011). ‘You have to sit and explain it all, and explain
yourself’. Mothers’ experiences of support services for their
offspring with a rare genetic intellectual disability syndrome. Journal of Genetic Counseling, 20, 165-177.
The questionnaire was first used in a study carried out with colleagues at the Cerebra Centre in the School of Psychology at the University of Birmingham - focused on Cri du Chat, Cornelia de Lange and Angelman's syndromes:
Hastings, R. P., Oliver, C., Howlin, P., Moss, J., Petty, J., &
Tunnicliffe, P. (2011). Psychological well-being in parents of children with
Angelman, Cornelia de Lange, and Cri du Chat syndromes. Journal of Intellectual Disability Research, 55, 397-410.
The questionnaire is scored simply by generating a total of the score from 0-3 on each of the individual items.
The GSSS can be downloaded here.