Literature DB >> 22324752

"It's not what you were expecting, but it's still a beautiful journey": the experience of mothers of children with Down syndrome.

Divia Pillay1, Sonya Girdler, Marie Collins, Helen Leonard.   

Abstract

AIM: The purpose of this study was to describe qualitatively the experience of parenting for mothers of a child with Down syndrome and to explore what if any was the role of spirituality and organized religion in this experience.
METHOD: A homogenous sample of eight mothers of children between 7 and 12 years of age with Down syndrome was recruited through a population-based source of families of children with Down syndrome in Western Australia. In-depth interviews were used to explore the mother's experience of parenting and to examine the role of spirituality and organized religion in their personal experience of mothering.
RESULTS: In this study, stressful life events recounted by the mothers included initial acceptance, developmental behaviour of the child, functionality of the child, health conditions and financial stress. Overall spirituality was described as a stronger and more dynamic source of support than organized religion in coping with stressors and life's challenges associated with raising a child with Down syndrome.
CONCLUSION: Findings from this study revealed that being a mother to a child with Down syndrome can best be described as a mosaic of experiences, emotions and a journey of self growth. Both spirituality and organized religion to a greater or lesser extent were useful in mediating stress and supporting mothers particularly during challenging life events in the course of their journey with their child with Down syndrome.

Entities:  

Mesh:

Year:  2012        PMID: 22324752     DOI: 10.3109/09638288.2011.650313

Source DB:  PubMed          Journal:  Disabil Rehabil        ISSN: 0963-8288            Impact factor:   3.033


  10 in total

1.  Socially repugnant or the standard of care: Is there a distinction between sex-selective and ability-selective abortion?

Authors:  Rebecca Lobo; Garnett Genuis
Journal:  Can Fam Physician       Date:  2014-03       Impact factor: 3.275

2.  Transition to adulthood for young people with intellectual disability: the experiences of their families.

Authors:  Helen Leonard; Kitty-Rose Foley; Terri Pikora; Jenny Bourke; Kingsley Wong; Lyn McPherson; Nick Lennox; Jenny Downs
Journal:  Eur Child Adolesc Psychiatry       Date:  2016-05-11       Impact factor: 4.785

3.  Family Sense-Making After a Down Syndrome Diagnosis.

Authors:  Lauren Clark; Heather E Canary; Kyle McDougle; Rebekah Perkins; Ruth Tadesse; Avery E Holton
Journal:  Qual Health Res       Date:  2020-07-03

4.  Using ethnodrama to support parents in sense-making after prenatal or neonatal diagnosis of a child's disabling condition.

Authors:  Jacqueline Eaton; Sydney Cheek-O'Donnell; Erin Johnson; Lauren Clark
Journal:  J Appl Res Intellect Disabil       Date:  2021-10-27

5.  A 'cure' for Down syndrome: what do parents want?

Authors:  A Inglis; Z Lohn; J C Austin; C Hippman
Journal:  Clin Genet       Date:  2014-03-21       Impact factor: 4.438

6.  "Yeah that Made a Big Difference!": The Importance of the Relationship between Health Professionals and Fathers Who Have a Child with Down Syndrome.

Authors:  Freyja Docherty; Rebecca Dimond
Journal:  J Genet Couns       Date:  2017-11-20       Impact factor: 2.537

7.  Mind-Mindedness and Stress in Parents of Children with Developmental Disorders.

Authors:  Fionnuala Larkin; Marianna E Hayiou-Thomas; Zaynah Arshad; Matthew Leonard; Frances J Williams; Nicoletta Katseniou; Rania N Malouta; Charlotte R P Marshall; Maria Diamantopoulou; Etonia Tang; Sneha Mani; Elizabeth Meins
Journal:  J Autism Dev Disord       Date:  2021-02

8.  Measurement of Family Management in Families of Individuals With Down Syndrome: A Cross-Cultural Investigation.

Authors:  Marcia Van Riper; George J Knafl; Maria do Céu Barbieri-Figueiredo; Maria Caples; Hyunkyung Choi; Gert de Graaf; Elysângela Dittz Duarte; Junko Honda; Elena Marta; Supapak Phetrasuwan; Sara Alfieri; Margareth Angelo; Wannee Deoisres; Louise Fleming; Aline Soares Dos Santos; Maria João Rocha da Silva; Beth Skelton; Shelley van der Veek; Kathleen A Knafl
Journal:  J Fam Nurs       Date:  2020-12-04       Impact factor: 3.818

9.  An investigation of the determinants of quality of life in adolescents and young adults with Down syndrome.

Authors:  Fatma Haddad; Jenny Bourke; Kingsley Wong; Helen Leonard
Journal:  PLoS One       Date:  2018-06-13       Impact factor: 3.240

10.  Parenting children with Down syndrome: Societal influences.

Authors:  Lourdes Huiracocha; Carlos Almeida; Karina Huiracocha; Jorge Arteaga; Andrea Arteaga; Stuart Blume
Journal:  J Child Health Care       Date:  2017-08-28       Impact factor: 1.979

  10 in total

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