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Griffith GM, Hastings RP, Nash S, et al. "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. J Genet Couns. 2011;20(2):165-77doi: 10.1007/s10897-010-9339-4.
Griffith, G. 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(2), 165-77. https://doi.org/10.1007/s10897-010-9339-4
Griffith, Gemma Maria, et al. ""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 vol. 20,2 (2011): 165-77. doi: https://doi.org/10.1007/s10897-010-9339-4
Griffith GM, Hastings RP, Nash S, Petalas M, Oliver C, Howlin P, Moss J, Petty J, Tunnicliffe P. "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. J Genet Couns. 2011 Apr;20(2):165-77. doi: 10.1007/s10897-010-9339-4. Epub 2011 Jan 04. PMID: 21203808.
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J Genet Couns. 2011 Apr;20(2):165-77. doi: 10.1007/s10897-010-9339-4. Epub 2011 Jan 04.

"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

Gemma Maria Griffith, Richard P Hastings, Susie Nash, Michael Petalas, Chris Oliver, Patricia Howlin, Joanna Moss, Jane Petty, Penelope Tunnicliffe

Affiliations

  1. School of Psychology, Bangor University, Brigantia Building, Penrhalt Road, Bangor, LL57 2AS, UK. [email protected]

PMID: 21203808 DOI: 10.1007/s10897-010-9339-4

Abstract

The experiences of mothers of adult offspring with Angelman, Cornelia de Lange, or Cri du Chat syndrome have not been previously explored in research. The current study focuses on experiences with social and medical services and the impact the rareness of an adult offspring's syndrome has on the experiences of mothers. Eight mothers of adults with Angelman, Cornelia de Lange, or Cri du Chat syndrome were interviewed. Thematic Content Analysis was used to interpret the interviews. Four themes emerged from the analysis: (i) The rarity of their offspring's syndrome, (ii) Uneven medical and social care service provision, (iii) The inertia of social care services, and (iv) Mothers as advocates. Mothers felt that the rareness of their offspring's syndrome did not affect experiences with social care services, but did affect access to medical services and some aspects of day-to-day living. Accessing appropriate social care services was reported to be a lengthy and complex process. These data may help inform care service providers about how best to support adults with rare genetic syndromes and their families.

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