Literature DB >> 9722107

Reframing the meaning of disability to families: the embrace of paradox.

E Larson.   

Abstract

In our society, families turn to medical science and health practitioners for assistance when a family member becomes disabled. In the cases of chronic illnesses and developmental disabilities, health professionals may focus interventions on the disease processes, feeling unprepared to deal with the broader issues families struggle with in managing disability. In addition, collaboration between professionals and parents may be strained when family's discourse is viewed as unrealistic, overly emotional, exceedingly optimistic and confusing by professionals. Using in-depth case studies, this qualitative research examined the daily occupations and subjective well-being of six Mexican-origin mothers parenting children with disabilities. Emergent findings demonstrated that these mothers do express apparently contradictory emotions of grief and joy, hope and fear that influenced their subjective well-being. The meaning of the mothers' contrary statements was illuminated in a life metaphor, the embrace of paradox. The embrace of paradox was the management of the internal tension of opposing forces between loving the child as he or she was and wanting to erase the disability, between dealing with the incurability while pursuing solutions and between maintaining hopefulness for the child's future while being given negative information and battling their own fears. The tensions created by the paradox promoted an internal striving to maintain a tenuous hopefulness despite "crashes" in their maternal work, and promoted an extension of maternal skills working toward a hopeful life trajectory for the mother and her child. In the embrace of paradox mothers created a positive bias and regained a sense of control that fueled their optimism in maternal work.

Entities:  

Mesh:

Year:  1998        PMID: 9722107     DOI: 10.1016/s0277-9536(98)00113-0

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


  12 in total

1.  Parent Perceptions of How Nurse Encounters Can Provide Caring Support for the Family in Early Acute Care After Children's Severe Traumatic Brain Injury.

Authors:  Cecelia I Roscigno
Journal:  J Neurosci Nurs       Date:  2016-04       Impact factor: 1.230

Review 2.  Exploring diagnostic processes: social science perspectives.

Authors:  J McLaughlin
Journal:  Arch Dis Child       Date:  2005-03       Impact factor: 3.791

3.  Vicarious futurity in autism and childhood dementia.

Authors:  Michelle G Wong; Sandra A Heriot
Journal:  J Autism Dev Disord       Date:  2006-12-20

4.  Promoting meaning-making to help our patients grieve: an exemplar for genetic counselors and other health care professionals.

Authors:  Heather A Douglas
Journal:  J Genet Couns       Date:  2014-06-24       Impact factor: 2.537

5.  Quality of life in spina bifida: importance of parental hope.

Authors:  H M Kirpalani; P C Parkin; A R Willan; D L Fehlings; P L Rosenbaum; D King; A J Van Nie
Journal:  Arch Dis Child       Date:  2000-10       Impact factor: 3.791

6.  Exploring the genetic counselor's role in facilitating meaning-making: rare disease diagnoses.

Authors:  Benjamin M Helm
Journal:  J Genet Couns       Date:  2015-01-08       Impact factor: 2.537

7.  Disability Experiences and Perspectives Regarding Reproductive Decisions, Parenting, and the Utility of Genetic Services: a Qualitative Study.

Authors:  C Roadhouse; C Shuman; K Anstey; K Sappleton; D Chitayat; E Ignagni
Journal:  J Genet Couns       Date:  2018-06-16       Impact factor: 2.537

8.  Parenting Children with Developmental Delays: The Role of Positive Beliefs.

Authors:  Emilie Paczkowski; Bruce L Baker
Journal:  J Ment Health Res Intellect Disabil       Date:  2008-07-01

9.  The discovery of autism: Indian parents' experiences of caring for their child with an autism spectrum disorder.

Authors:  Miraj U Desai; Gauri Divan; Frederick J Wertz; Vikram Patel
Journal:  Transcult Psychiatry       Date:  2012-06-21

10.  The Impact of Self-Narratives of Motherhood for Mothers of Children with Autism.

Authors:  Jerzy Trzebiński; Agnieszka Wołowicz-Ruszkowska; Adrian Dominik Wójcik
Journal:  Front Psychol       Date:  2016-12-05
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