Literature DB >> 21937189

The role of hope in adaptation to uncertainty: the experience of caregivers of children with Down syndrome.

Megan Truitt1, Barbara Biesecker, George Capone, Thomas Bailey, Lori Erby.   

Abstract

OBJECTIVE: The goal of this study was to investigate the relationships between perceived uncertainty, hope, and adaptation in caregivers of children with Down syndrome (DS).
METHODS: A total of 546 caregivers were recruited from local and national DS groups and from a DS clinic list. A cross-sectional survey examined caregivers' levels of perceived uncertainty, hope, and adaptation. The hope that caregivers had for their child was also measured.
RESULTS: Uncertainty, hope and adaptation were all significantly correlated, with uncertainty and hope independently predicting caregiver adaptation. Caregivers' motivation to reach goals for their child was higher than their ability to think of ways to meet those goals, and their lessened ability to think of ways to reach goals was significantly related to decreased adaptation levels.
CONCLUSION: Findings from this study suggest that having hope in the face of uncertainty is important in adaptation but that caregivers struggle with having hope related to thinking of ways to reach goals for their child. PRACTICE IMPLICATIONS: The results of this study indicate that perceived uncertainty and hope may be important targets for improving psychological well-being. Interventions that assist caregivers in setting and attaining appropriate goals may be of particular interest.
Copyright © 2011 Elsevier Ireland Ltd. All rights reserved.

Entities:  

Mesh:

Year:  2011        PMID: 21937189      PMCID: PMC3816013          DOI: 10.1016/j.pec.2011.08.015

Source DB:  PubMed          Journal:  Patient Educ Couns        ISSN: 0738-3991


  16 in total

Review 1.  Down syndrome: cognitive phenotype.

Authors:  Wayne Silverman
Journal:  Ment Retard Dev Disabil Res Rev       Date:  2007

2.  Uncertainty and perceived personal control among parents of children with rare chromosome conditions: the role of genetic counseling.

Authors:  Shawn E Lipinski; Michael J Lipinski; Leslie G Biesecker; Barbara B Biesecker
Journal:  Am J Med Genet C Semin Med Genet       Date:  2006-11-15       Impact factor: 3.908

3.  National estimates and race/ethnic-specific variation of selected birth defects in the United States, 1999-2001.

Authors:  Mark A Canfield; Margaret A Honein; Nataliya Yuskiv; Jian Xing; Cara T Mai; Julianne S Collins; Owen Devine; Joann Petrini; Tunu A Ramadhani; Charlotte A Hobbs; Russell S Kirby
Journal:  Birth Defects Res A Clin Mol Teratol       Date:  2006-11

4.  Parents' perception of uncertainty concerning their hospitalized child.

Authors:  M H Mishel
Journal:  Nurs Res       Date:  1983 Nov-Dec       Impact factor: 2.381

5.  Parental attitudes toward a diagnosis in children with unidentified multiple congenital anomaly syndromes.

Authors:  E T Rosenthal; L G Biesecker; B B Biesecker
Journal:  Am J Med Genet       Date:  2001-10-01

Review 6.  Promoting psychological well-being in the face of serious illness: when theory, research and practice inform each other.

Authors:  S Folkman; S Greer
Journal:  Psychooncology       Date:  2000 Jan-Feb       Impact factor: 3.894

Review 7.  Children with disabilities: a longitudinal study of child development and parent well-being.

Authors:  P Hauser-Cram; M E Warfield; J P Shonkoff; M W Krauss; A Sayer; C C Upshur
Journal:  Monogr Soc Res Child Dev       Date:  2001

8.  Accommodative coping and well-being of midlife parents of children with mental health problems or developmental disabilities.

Authors:  Marsha Mailick Seltzer; Jan S Greenberg; Frank J Floyd; Jinkuk Hong
Journal:  Am J Orthopsychiatry       Date:  2004-04

9.  A place for genetic uncertainty: parents valuing an unknown in the meaning of disease.

Authors:  Ian Whitmarsh; Arlene M Davis; Debra Skinner; Donald B Bailey
Journal:  Soc Sci Med       Date:  2007-06-11       Impact factor: 4.634

10.  Hope as a psychological resilience factor in mothers and fathers of children with intellectual disabilities.

Authors:  T J Lloyd; R Hastings
Journal:  J Intellect Disabil Res       Date:  2009-12
View more
  20 in total

1.  Development and validation of the Psychological Adaptation Scale (PAS): use in six studies of adaptation to a health condition or risk.

Authors:  Barbara B Biesecker; Lori H Erby; Samuel Woolford; Jessica Young Adcock; Julie S Cohen; Amanda Lamb; Katie V Lewis; Megan Truitt; Amy Turriff; Bryce B Reeve
Journal:  Patient Educ Couns       Date:  2013-08-28

2.  Posttraumatic growth and hope in parents of children with cancer.

Authors:  Stephanie E Hullmann; David A Fedele; Elizabeth S Molzon; Sunnye Mayes; Larry L Mullins
Journal:  J Psychosoc Oncol       Date:  2014

3.  High Levels of Interest in Reproductive Genetic Information in Parents of Children and Adults With Hirschsprung Disease.

Authors:  Courtney D Berrios; Aravinda Chakravarti; Barbara B Biesecker
Journal:  J Pediatr Gastroenterol Nutr       Date:  2019-09       Impact factor: 2.839

4.  Communicating microarray results of uncertain clinical significance in consultation summary letters and implications for practice.

Authors:  Jean Lillian Paul; Rachel Pope-Couston; Samantha Wake; Trent Burgess; Tiong Yang Tan
Journal:  Eur J Hum Genet       Date:  2016-11-16       Impact factor: 4.246

5.  Factors Associated with Parental Adaptation to Children with an Undiagnosed Medical Condition.

Authors:  Tatiane Yanes; Linda Humphreys; Aideen McInerney-Leo; Barbara Biesecker
Journal:  J Genet Couns       Date:  2016-12-30       Impact factor: 2.537

6.  Factors associated with adaptation to Klinefelter syndrome: the experience of adolescents and adults.

Authors:  Amy Turriff; Howard P Levy; Barbara Biesecker
Journal:  Patient Educ Couns       Date:  2014-08-27

7.  Uncertainty, hope, and coping efficacy among mothers of children with Duchenne/Becker muscular dystrophy.

Authors:  Megan Bell; Barbara B Biesecker; Joann Bodurtha; Holly L Peay
Journal:  Clin Genet       Date:  2019-04-03       Impact factor: 4.438

8.  Psychosocial Profiles of Parents of Children with Undiagnosed Diseases: Managing Well or Just Managing?

Authors:  Allyn McConkie-Rosell; Stephen R Hooper; Loren D M Pena; Kelly Schoch; Rebecca C Spillmann; Yong-Hui Jiang; Heidi Cope; Christina Palmer; Vandana Shashi
Journal:  J Genet Couns       Date:  2018-01-02       Impact factor: 2.537

9.  Hope and burden among Latino families of adults with schizophrenia.

Authors:  Mercedes Hernandez; Concepción Barrio; Ann-Marie Yamada
Journal:  Fam Process       Date:  2013-07-17

10.  Whole-exome sequencing in pediatrics: parents' considerations toward return of unsolicited findings for their child.

Authors:  Candice Cornelis; Aad Tibben; Wybo Dondorp; Mieke van Haelst; Annelien L Bredenoord; Nine Knoers; Marcus Düwell; Ineke Bolt; Marieke van Summeren
Journal:  Eur J Hum Genet       Date:  2016-07-27       Impact factor: 4.246

View more

北京卡尤迪生物科技股份有限公司 © 2022-2023.