Mental Health and Well-Being in Mothers of Children With Rare Genetic Syndromes Showing Chronic Challenging Behavior:: A Cross-Sectional and Longitudinal Study

Dawn Adams; Samantha Clarke; Gemma Griffith; Pat Howlin; Jo Moss; Jane Petty; Penny Tunnicliffe; Chris Oliver

doi:10.1352/1944-7558-123.3.241

Mental Health and Well-Being in Mothers of Children With Rare Genetic Syndromes Showing Chronic Challenging Behavior: A Cross-Sectional and Longitudinal Study

Dawn Adams, Samantha Clarke, Gemma Griffith, Pat Howlin, Jo Moss, Jane Petty, Penny Tunnicliffe, Chris Oliver

Psychology

Research output: Contribution to journal › Article › peer-review

7 Citations (Scopus)

395 Downloads (Pure)

Abstract

It is well documented that mothers of children with challenging behavior (CB) experience elevated levels of stress and that this persists over time, but less is known about the experience of mothers of children with rare genetic syndromes. This article describes 2 studies, 1 cross-sectional and 1 longitudinal, comparing well-being in mothers of children with Angelman, Cornelia de Lange and Cri du Chat syndrome who have either shown chronic CB ( n = 18) or low/no CB ( n = 26) in the preceding 7 years. The presence of chronic, long-term CB increased maternal stress but not depression or anxiety, and did not influence positive well-being. Stress relating specifically to their child's genetic syndrome reduced with age, highlighting the need for further exploration in this area.

Original language	English
Pages (from-to)	241-253
Number of pages	13
Journal	American Journal on Intellectual and Developmental Disabilities
Volume	123
Issue number	3
DOIs	https://doi.org/10.1352/1944-7558-123.3.241
Publication status	Published - 1 May 2018

Keywords

intellectual disabilities
syndrome
challenging behaviour
mental health

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

Access to Document

10.1352/1944-7558-123.3.241Licence: None: All rights reserved

Adams_et_al_Mental_health_and_well-being_American_Journal_on_Intellectual_and_Developmental_Disabilities_2018
Dawn Adams, Samantha Clarke, Gemma Griffith, Pat Howlin, Jo Moss, Jane Petty, Penny Tunnicliffe, and Chris Oliver (2018) Mental Health and Well-Being in Mothers of Children With Rare Genetic Syndromes Showing Chronic Challenging Behavior: A Cross-Sectional and Longitudinal Study. American Journal on Intellectual and Developmental Disabilities: May 2018, Vol. 123, No. 3, pp. 241-253. https://doi.org/10.1352/1944-7558-123.3.241
Accepted author manuscript, 510 KBLicence: None: All rights reserved

http://www.aaiddjournals.org/doi/10.1352/1944-7558-123.3.241Licence: None: All rights reserved

Cite this

Adams, D., Clarke, S., Griffith, G., Howlin, P., Moss, J., Petty, J., Tunnicliffe, P., & Oliver, C. (2018). Mental Health and Well-Being in Mothers of Children With Rare Genetic Syndromes Showing Chronic Challenging Behavior: A Cross-Sectional and Longitudinal Study. American Journal on Intellectual and Developmental Disabilities, 123(3), 241-253. https://doi.org/10.1352/1944-7558-123.3.241

@article{bfa466aace4c429795116635a05c4e25,

title = "Mental Health and Well-Being in Mothers of Children With Rare Genetic Syndromes Showing Chronic Challenging Behavior:: A Cross-Sectional and Longitudinal Study",

abstract = "It is well documented that mothers of children with challenging behavior (CB) experience elevated levels of stress and that this persists over time, but less is known about the experience of mothers of children with rare genetic syndromes. This article describes 2 studies, 1 cross-sectional and 1 longitudinal, comparing well-being in mothers of children with Angelman, Cornelia de Lange and Cri du Chat syndrome who have either shown chronic CB ( n = 18) or low/no CB ( n = 26) in the preceding 7 years. The presence of chronic, long-term CB increased maternal stress but not depression or anxiety, and did not influence positive well-being. Stress relating specifically to their child's genetic syndrome reduced with age, highlighting the need for further exploration in this area.",

keywords = "intellectual disabilities , syndrome , challenging behaviour , mental health",

author = "Dawn Adams and Samantha Clarke and Gemma Griffith and Pat Howlin and Jo Moss and Jane Petty and Penny Tunnicliffe and Chris Oliver",

year = "2018",

month = may,

day = "1",

doi = "10.1352/1944-7558-123.3.241",

language = "English",

volume = "123",

pages = "241--253",

journal = "American Journal on Intellectual and Developmental Disabilities",

issn = "1944-7515",

publisher = "American Association on Intellectual and Developmental Disabilities",

number = "3",

}

Adams, D, Clarke, S, Griffith, G, Howlin, P, Moss, J, Petty, J, Tunnicliffe, P & Oliver, C 2018, 'Mental Health and Well-Being in Mothers of Children With Rare Genetic Syndromes Showing Chronic Challenging Behavior: A Cross-Sectional and Longitudinal Study', American Journal on Intellectual and Developmental Disabilities, vol. 123, no. 3, pp. 241-253. https://doi.org/10.1352/1944-7558-123.3.241

Mental Health and Well-Being in Mothers of Children With Rare Genetic Syndromes Showing Chronic Challenging Behavior: A Cross-Sectional and Longitudinal Study. / Adams, Dawn; Clarke, Samantha; Griffith, Gemma et al.
In: American Journal on Intellectual and Developmental Disabilities, Vol. 123, No. 3, 01.05.2018, p. 241-253.

Research output: Contribution to journal › Article › peer-review

TY - JOUR

T1 - Mental Health and Well-Being in Mothers of Children With Rare Genetic Syndromes Showing Chronic Challenging Behavior:

T2 - A Cross-Sectional and Longitudinal Study

AU - Adams, Dawn

AU - Clarke, Samantha

AU - Griffith, Gemma

AU - Howlin, Pat

AU - Moss, Jo

AU - Petty, Jane

AU - Tunnicliffe, Penny

AU - Oliver, Chris

PY - 2018/5/1

Y1 - 2018/5/1

N2 - It is well documented that mothers of children with challenging behavior (CB) experience elevated levels of stress and that this persists over time, but less is known about the experience of mothers of children with rare genetic syndromes. This article describes 2 studies, 1 cross-sectional and 1 longitudinal, comparing well-being in mothers of children with Angelman, Cornelia de Lange and Cri du Chat syndrome who have either shown chronic CB ( n = 18) or low/no CB ( n = 26) in the preceding 7 years. The presence of chronic, long-term CB increased maternal stress but not depression or anxiety, and did not influence positive well-being. Stress relating specifically to their child's genetic syndrome reduced with age, highlighting the need for further exploration in this area.

AB - It is well documented that mothers of children with challenging behavior (CB) experience elevated levels of stress and that this persists over time, but less is known about the experience of mothers of children with rare genetic syndromes. This article describes 2 studies, 1 cross-sectional and 1 longitudinal, comparing well-being in mothers of children with Angelman, Cornelia de Lange and Cri du Chat syndrome who have either shown chronic CB ( n = 18) or low/no CB ( n = 26) in the preceding 7 years. The presence of chronic, long-term CB increased maternal stress but not depression or anxiety, and did not influence positive well-being. Stress relating specifically to their child's genetic syndrome reduced with age, highlighting the need for further exploration in this area.

KW - intellectual disabilities

KW - syndrome

KW - challenging behaviour

KW - mental health

U2 - 10.1352/1944-7558-123.3.241

DO - 10.1352/1944-7558-123.3.241

M3 - Article

C2 - 29671635

SN - 1944-7515

VL - 123

SP - 241

EP - 253

JO - American Journal on Intellectual and Developmental Disabilities

JF - American Journal on Intellectual and Developmental Disabilities

IS - 3

ER -