"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

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"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. / Griffith, GM; Hastings, RP; Nash, S; Petalas, M; Oliver, C; Howlin, P; Moss, J; Petty, Jane; Tunnicliffe, Penelope.

In: Journal of Genetic Counseling, Vol. 20, No. 2, 01.04.2011, p. 165-177.

Research output: Contribution to journalArticle

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Griffith, GM ; Hastings, RP ; Nash, S ; Petalas, M ; Oliver, C ; Howlin, P ; Moss, J ; Petty, Jane ; Tunnicliffe, Penelope. / "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. In: Journal of Genetic Counseling. 2011 ; Vol. 20, No. 2. pp. 165-177.

Bibtex

@article{110a4d7208f241cdaaba8361d2ae494c,
title = "{"}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",
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.",
keywords = "Cri du Chat syndrome, Angelman syndrome, Support services, Rare genetic syndromes, Cornelia de Lange syndrome, Family functioning, Qualitative",
author = "GM Griffith and RP Hastings and S Nash and M Petalas and C Oliver and P Howlin and J Moss and Jane Petty and Penelope Tunnicliffe",
year = "2011",
month = apr
day = "1",
doi = "10.1007/s10897-010-9339-4",
language = "English",
volume = "20",
pages = "165--177",
journal = "Journal of Genetic Counseling",
issn = "1059-7700",
publisher = "Springer",
number = "2",

}

RIS

TY - JOUR

T1 - "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

AU - Griffith, GM

AU - Hastings, RP

AU - Nash, S

AU - Petalas, M

AU - Oliver, C

AU - Howlin, P

AU - Moss, J

AU - Petty, Jane

AU - Tunnicliffe, Penelope

PY - 2011/4/1

Y1 - 2011/4/1

N2 - 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.

AB - 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.

KW - Cri du Chat syndrome

KW - Angelman syndrome

KW - Support services

KW - Rare genetic syndromes

KW - Cornelia de Lange syndrome

KW - Family functioning

KW - Qualitative

U2 - 10.1007/s10897-010-9339-4

DO - 10.1007/s10897-010-9339-4

M3 - Article

C2 - 21203808

VL - 20

SP - 165

EP - 177

JO - Journal of Genetic Counseling

JF - Journal of Genetic Counseling

SN - 1059-7700

IS - 2

ER -