Literature DB >> 23990318

From constraints to opportunities? Provision of psychosocial support in portuguese oncogenetic counseling services.

Alvaro Mendes1, Liliana Sousa, Milena Paneque.   

Abstract

Although available guidelines for familial cancer risk counseling clearly state the need to provide adequate psychosocial assessments and support, this feature of care is only available in part for individuals and families in oncogenetic counseling protocols in Portugal. The purpose of this study was to examine the psychosocial aspects of oncogenetic counseling provided by a sample of Portuguese genetics professionals. We sought to ascertain perceived need for the provision of psychosocial services and ways to enhance the psychosocial focus in service delivery. A qualitative study was designed; semi-structured focus groups and individual interviews were performed with 30 professionals from Portuguese healthcare institutions where oncogenetic counseling is offered. Findings suggest: current practice is aligned with the teaching model, with a mainly information-based focus; use of psychosocial counseling techniques and psychosocial support is limited throughout the genetic counseling timeline; there is a limited workforce of adequately trained psychosocial professionals, who are disadvantaged by structural and organizational constraints. These factors are considered to be serious barriers for psychosocial delivery. Development of multidisciplinary teams working in oncogenetics, and need for further counselling skills and training for genetics healthcare professionals were identified as priorities. Implications for practice and policy are discussed. Portuguese genetic counselors who have recently completed their training, may therefore contribute to enhanced psychosocial services delivery.

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Year:  2013        PMID: 23990318     DOI: 10.1007/s10897-013-9612-4

Source DB:  PubMed          Journal:  J Genet Couns        ISSN: 1059-7700            Impact factor:   2.537


  43 in total

1.  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

2.  Coming full circle: a reciprocal-engagement model of genetic counseling practice.

Authors:  Patricia McCarthy Veach; Dianne M Bartels; Bonnie S Leroy
Journal:  J Genet Couns       Date:  2007-10-13       Impact factor: 2.537

3.  Practice-based competencies for accreditation of and training in graduate programs in genetic counseling.

Authors:  B A Fine; D L Baker; M B Fiddler
Journal:  J Genet Couns       Date:  1996-09       Impact factor: 2.537

Review 4.  Quality assessment of genetic counseling process in the context of presymptomatic testing for late-onset disorders: a thematic analysis of three review articles.

Authors:  Milena Paneque; Jorge Sequeiros; Heather Skirton
Journal:  Genet Test Mol Biomarkers       Date:  2011-08-05

5.  Families' experience of oncogenetic counselling: accounts from a heterogeneous hereditary cancer risk population.

Authors:  Álvaro Mendes; Liliana Sousa
Journal:  Fam Cancer       Date:  2012-06       Impact factor: 2.375

6.  What counts as effective genetic counselling for presymptomatic testing in late-onset disorders? A study of the consultand's perspective.

Authors:  Lídia Guimarães; Jorge Sequeiros; Heather Skirton; Milena Paneque
Journal:  J Genet Couns       Date:  2013-01-07       Impact factor: 2.537

7.  Patients' perceptions of what makes genetic counselling effective: an interpretative phenomenological analysis.

Authors:  Rhona Macleod; David Craufurd; Katie Booth
Journal:  J Health Psychol       Date:  2002-03

8.  Essential elements of genetic cancer risk assessment, counseling, and testing: updated recommendations of the National Society of Genetic Counselors.

Authors:  Bronson D Riley; Julie O Culver; Cécile Skrzynia; Leigha A Senter; June A Peters; Josephine W Costalas; Faith Callif-Daley; Sherry C Grumet; Katherine S Hunt; Rebecca S Nagy; Wendy C McKinnon; Nancie M Petrucelli; Robin L Bennett; Angela M Trepanier
Journal:  J Genet Couns       Date:  2011-12-02       Impact factor: 2.537

Review 9.  Genetic counseling in primary care: longitudinal, psychosocial issues in genetic diagnosis and counseling.

Authors:  Jeffrey R Martin; Adam S Wilikofsky
Journal:  Prim Care       Date:  2004-09       Impact factor: 2.907

10.  An assessment of written patient information provided at the genetic clinic and relating to genetic testing in seven European countries.

Authors:  Celine Lewis; Pritti Mehta; Alastair Kent; Heather Skirton; Domenico Coviello
Journal:  Eur J Hum Genet       Date:  2007-06-13       Impact factor: 4.246

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  4 in total

1.  Genetics Health Professionals' Views on Quality of Genetic Counseling Service Provision for Presymptomatic Testing in Late-Onset Neurological Diseases in Portugal: Core Components, Specific Challenges and the Need for Assessment Tools.

Authors:  M Paneque; Á Mendes; L Guimarães; J Sequeiros; H Skirton
Journal:  J Genet Couns       Date:  2014-11-04       Impact factor: 2.537

2.  Genetic Counseling in Portugal: Education, Practice and a Developing Profession.

Authors:  Milena Paneque; Álvaro Mendes; Jorge Saraiva; Jorge Sequeiros
Journal:  J Genet Couns       Date:  2015-03-03       Impact factor: 2.537

3.  The Contribution of the Reciprocal-Engagement Model as a Theoretical Framework of a Portuguese Scale for Quality Assessment of Genetic Counseling.

Authors:  C Costa; M S Lemos; Milena Paneque
Journal:  J Genet Couns       Date:  2018-06-25       Impact factor: 2.537

Review 4.  The composition and capacity of the clinical genetics workforce in high-income countries: a scoping review.

Authors:  Nick Dragojlovic; Kennedy Borle; Nicola Kopac; Ursula Ellis; Patricia Birch; Shelin Adam; Jan M Friedman; Amy Nisselle; Alison M Elliott; Larry D Lynd
Journal:  Genet Med       Date:  2020-06-24       Impact factor: 8.822

  4 in total

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