Literature DB >> 17014946

"We're tired, not sad": benefits and burdens of mothering a child with a disability.

Sara Eleanor Green1.   

Abstract

Caregiver burden has received considerable emphasis in the literature on the social experience of mothering children with disabilities. Little attention has been paid, however, to either the nature of the burdens perceived or to maternal ability to see beyond the burdens to the benefits of their caregiving role. This study utilizes a mixed methods approach to examine these neglected aspects of the social experience of mothering children with disabilities. Findings of a survey of 81 mothers of children with disabilities in Florida, USA and follow-up interviews with 7 of these mothers indicate that: 1. For most of the mothers included in the study, "the burden of care" is a matter of socio-structural constraints (Objective Burden) rather than emotional distress (Subjective Burden); 2. Despite the socio-structural constraints associated with caring for a child with complex needs, most mothers perceive valuable benefits in having a child with a disability; and 3. Perceived Stigma has an important positive impact on both dimensions of burden and, through its impact on Subjective Burden, can decrease the perceived benefits of caring for a child with a disability.

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Year:  2006        PMID: 17014946     DOI: 10.1016/j.socscimed.2006.08.025

Source DB:  PubMed          Journal:  Soc Sci Med        ISSN: 0277-9536            Impact factor:   4.634


  43 in total

1.  The unmet concerns of twins with special needs: diagnostic challenges and service recommendations.

Authors:  Vanessa A Costello-Harris; Nancy L Segal
Journal:  Community Pract       Date:  2015-02

2.  Caregiving and Perceived Generativity: A Positive and Protective Aspect of Providing Care?

Authors:  Molli R Grossman; Tara L Gruenewald
Journal:  Clin Gerontol       Date:  2017-04-18       Impact factor: 2.619

3.  Challenges, coping strategies, and unmet needs of families with a child with autism spectrum disorder in Goa, India.

Authors:  Gauri Divan; Vivek Vajaratkar; Miraj U Desai; Luisa Strik-Lievers; Vikram Patel
Journal:  Autism Res       Date:  2012-03-30       Impact factor: 5.216

4.  Brief Report: Burden of Care in Mothers of Children with Autism Spectrum Disorder or Intellectual Disability.

Authors:  Jenny Fairthorne; Nick de Klerk; Helen Leonard
Journal:  J Autism Dev Disord       Date:  2016-03

Review 5.  Children's complex care needs: a systematic concept analysis of multidisciplinary language.

Authors:  Maria Brenner; Claire Kidston; Carol Hilliard; Imelda Coyne; Jessica Eustace-Cook; Carmel Doyle; Thelma Begley; Michael J Barrett
Journal:  Eur J Pediatr       Date:  2018-08-08       Impact factor: 3.183

6.  Social Isolation Among Families Caring for Children With Disabilities.

Authors:  Dennis J Baumgardner
Journal:  J Patient Cent Res Rev       Date:  2019-10-28

7.  "We have been magnified for years - Now you are under the microscope!": Co-researchers with Learning Disabilities Created an Online Survey to Challenge Public Understanding of Learning Disabilities.

Authors:  Dorota Chapko; Pino Frumiento; Nalini Edwards; Lizzie Emeh; Donald Kennedy; David McNicholas; Michaela Overton; Mark Snead; Robyn Steward; Jenny M Sutton; Evie Jeffreys; Catherine Long; Jess Croll-Knight; Ben Connors; Sam Castell-Ward; David Coke; Bethany McPeake; William Renel; Chris McGinley; Anna Remington; Dora Whittuck; John Kieffer; Sarah Ewans; Mark Williams; Mick Grierson
Journal:  Proc SIGCHI Conf Hum Factor Comput Syst       Date:  2020-04-21

8.  Benefits of Family Meals for Children With Special Therapeutic and Behavioral Needs.

Authors:  Beth W DeGrace; Ruth E Foust; Susan B Sisson; Karina R Lora
Journal:  Am J Occup Ther       Date:  2016 May-Jun

9.  A home-based intervention using augmentative and alternative communication (AAC) techniques in rural Kenya: what are the caregivers' experiences?

Authors:  J K Gona; C R Newton; S Hartley; K Bunning
Journal:  Child Care Health Dev       Date:  2013-03-03       Impact factor: 2.508

Review 10.  Parents' experiences of living with a child with a long-term condition: a rapid structured review of the literature.

Authors:  Joanna Smith; Francine Cheater; Hilary Bekker
Journal:  Health Expect       Date:  2013-01-14       Impact factor: 3.377

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