Literature DB >> 18823383

Adaptation to living with a genetic condition or risk: a mini-review.

B B Biesecker1, L Erby.   

Abstract

One goal of genetic counseling is to facilitate client adaptation to a genetic condition or risk. Adaptation refers to both the process of coming to terms with the implications of the condition or risk and the observable outcomes of that process. This review summarizes existing studies on how well clients adapt to living with a common chronic disease, and more specifically, a genetic condition. Overall, it appears that about one-third of clients do not adjust well to the stress of living with a genetic condition or at risk. However, the data are limited by inconsistencies in the conceptualization of adaptation, a paucity of theoretical models, poor study design and inadequate outcome measures. Well-designed studies based upon multidimensional models are needed that focus on familial as well as individual adaptation. We conclude with a summary of studies that have explored the use of interventions to enhance adaptation and suggest improved client outcomes. Further research should result in evidence-based interventions to facilitate client adaptation that can be used effectively by genetic providers within the confines of their clinical work.

Entities:  

Mesh:

Year:  2008        PMID: 18823383      PMCID: PMC2601714          DOI: 10.1111/j.1399-0004.2008.01088.x

Source DB:  PubMed          Journal:  Clin Genet        ISSN: 0009-9163            Impact factor:   4.438


  34 in total

Review 1.  Applying the transactional stress and coping model to sickle cell disorder and insulin-dependent diabetes mellitus: identifying psychosocial variables related to adjustment and intervention.

Authors:  Matthew C Hocking; John E Lochman
Journal:  Clin Child Fam Psychol Rev       Date:  2005-09

Review 2.  Scholarly literature review: Efficacy of psychological interventions for pediatric chronic illnesses.

Authors:  Ivan L Beale
Journal:  J Pediatr Psychol       Date:  2005-09-14

3.  A new definition of Genetic Counseling: National Society of Genetic Counselors' Task Force report.

Authors:  Robert Resta; Barbara Bowles Biesecker; Robin L Bennett; Sandra Blum; Susan Estabrooks Hahn; Michelle N Strecker; Janet L Williams
Journal:  J Genet Couns       Date:  2006-04       Impact factor: 2.537

Review 4.  Psychosocial intervention in pediatric epilepsy: a critique of the literature.

Authors:  Janelle L Wagner; Gigi Smith
Journal:  Epilepsy Behav       Date:  2005-10-24       Impact factor: 2.937

5.  Improving psychologic adjustment to chronic illness in cardiac patients. The role of depression and anxiety.

Authors:  Thomas J McLaughlin; Onesky Aupont; Kara Z Bambauer; Peter Stone; Mariquita G Mullan; Jane Colagiovanni; Elaine Polishuk; Michael Johnstone; Steven E Locke
Journal:  J Gen Intern Med       Date:  2005-12       Impact factor: 5.128

6.  Stress and well-being among parents of children with rare diseases: a prospective intervention study.

Authors:  Lotta Dellve; Lena Samuelsson; Andreas Tallborn; Anders Fasth; Lillemor R-M Hallberg
Journal:  J Adv Nurs       Date:  2006-02       Impact factor: 3.187

7.  Controlled prospective longitudinal study of women with cancer: I. Sexual functioning outcomes.

Authors:  B L Andersen; B Anderson; C deProsse
Journal:  J Consult Clin Psychol       Date:  1989-12

8.  Psychosocial Adaptation to Epilepsy: The Role of Coping Strategies.

Authors:  Hanoch Livneh; Lisa M. Wilson; Angelina Duchesneau; Richard F. Antonak
Journal:  Epilepsy Behav       Date:  2001-12       Impact factor: 2.937

Review 9.  Common adaptive tasks facing parents of children with chronic conditions.

Authors:  C Canam
Journal:  J Adv Nurs       Date:  1993-01       Impact factor: 3.187

Review 10.  Major developments in behavioral diabetes research.

Authors:  D J Cox; L Gonder-Frederick
Journal:  J Consult Clin Psychol       Date:  1992-08
View more
  28 in total

Review 1.  Quality of life in rare genetic conditions: a systematic review of the literature.

Authors:  Julie S Cohen; Barbara B Biesecker
Journal:  Am J Med Genet A       Date:  2010-05       Impact factor: 2.802

2.  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

3.  Extended family impact of genetic testing: the experiences of X-linked carrier grandmothers.

Authors:  Anna Lehmann; Beverley S Speight; Lauren Kerzin-Storrar
Journal:  J Genet Couns       Date:  2011-04-14       Impact factor: 2.537

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.  Parents' perceptions of the usefulness of chromosomal microarray analysis for children with autism spectrum disorders.

Authors:  Marian Reiff; Ellen Giarelli; Barbara A Bernhardt; Ebony Easley; Nancy B Spinner; Pamela L Sankar; Surabhi Mulchandani
Journal:  J Autism Dev Disord       Date:  2015-10

7.  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

8.  Adaptation of couples living with a high risk of breast/ovarian cancer and the association with risk-reducing surgery.

Authors:  Rachel Shapira; Erin Turbitt; Lori H Erby; Barbara B Biesecker; William M P Klein; Gillian W Hooker
Journal:  Fam Cancer       Date:  2018-10       Impact factor: 2.375

9.  Healthcare Coordination and Transition for Individuals with Genetic Conditions.

Authors:  Sharon Romelczyk; Sharon Homan; Joseph Telfair; Gaurav Dave; Alisha Keehn; Deborah Maiese
Journal:  Matern Child Health J       Date:  2015-10

10.  Feasibility of Coping Effectiveness Training for Caregivers of Children with Autism Spectrum Disorder: a Genetic Counseling Intervention.

Authors:  Christy Haakonsen Smith; Erin Turbitt; John Muschelli; Lori Leonard; Katie L Lewis; Brian Freedman; Michelle Muratori; Barbara B Biesecker
Journal:  J Genet Couns       Date:  2017-09-06       Impact factor: 2.537

View more

北京卡尤迪生物科技股份有限公司 © 2022-2023.