Literature DB >> 19042275

Formal and informal support needs of young women with BRCA mutations.

Allison Werner-Lin1.   

Abstract

This qualitative investigation aims to identify the salient support concerns of young women with BRCA mutations, a frequently understudied population with unique developmental, psychosocial, and family needs. Twenty-three unaffected BRCA gene alteration carriers aged 21 to 36 completed illness genograms and open-ended interviews. Transcripts were analyzed using the Listening Guide to highlight key themes, relationships, and meaning structures. Results reveal existing social support networks composed of family, partners, friends, and coworkers are often inadequate and formal services unavailable or underutilized. These findings suggest an important role for clinicians in reducing isolation, bolstering existing support networks, and designing innovative, targeted interventions that address the challenges specific to this age group. Interventions, such as the multifamily support group, should be integrated into genetic counseling protocols to mitigate the risk of distress.

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Year:  2008        PMID: 19042275     DOI: 10.1080/07347330802359776

Source DB:  PubMed          Journal:  J Psychosoc Oncol        ISSN: 0734-7332


  25 in total

1.  Closing the loop: action research in a multimodal hereditary cancer patient conference is an effective tool to assess and address patient needs.

Authors:  Carin R Espenschied; Deborah J MacDonald; Julie O Culver; Sharon Sand; Karen Hurley; Kimberly C Banks; Jeffrey N Weitzel; Kathleen R Blazer
Journal:  J Cancer Educ       Date:  2012-06       Impact factor: 2.037

2.  Legacies and Relationships: Diverse Social Networks and BRCA1/2 Risk Management Decisions and Actions.

Authors:  Anne L Ersig; Allison Werner-Lin; Lindsey Hoskins; Jennifer Young; Jennifer T Loud; June Peters; Mark H Greene
Journal:  J Fam Nurs       Date:  2018-12-12       Impact factor: 3.818

3.  Educational and Psychosocial Support Needs in Lynch Syndrome: Implementation and Assessment of an Educational Workshop and Support Group.

Authors:  Marina J Corines; Jada G Hamilton; Emily Glogowski; Chris A Anrig; Rachael Goldberg; Kate Niehaus; Erin Salo-Mullen; Megan Harlan; Margaret R Sheehan; Magan Trottier; Asad Ahsraf; Christina Tran; Lauren Jacobs; Rohini Rau-Murthy; Anne G Lincoln; Mark E Robson; Jose G Guillem; Arnold J Markowitz; Kenneth Offit; Zsofia K Stadler
Journal:  J Genet Couns       Date:  2016-10-12       Impact factor: 2.537

Review 4.  Family Communication, Risk Perception and Cancer Knowledge of Young Adults from BRCA1/2 Families: a Systematic Review.

Authors:  Alison L Young; Phyllis N Butow; Janine Vetsch; Veronica F Quinn; Andrea F Patenaude; Katherine M Tucker; Claire E Wakefield
Journal:  J Genet Couns       Date:  2017-06-30       Impact factor: 2.537

5.  What women with breast cancer discuss with clinicians about risk for their adolescent daughters.

Authors:  Erin Maloney; Shawna Edgerson; Mark Robson; Ken Offit; Richard Brown; Carma Bylund; David W Kissane
Journal:  J Psychosoc Oncol       Date:  2012

6.  Perspectives of Women Considering Bilateral Prophylactic Mastectomy and their Peers towards a Telephone-Based Peer Support Intervention.

Authors:  D St-Pierre; K Bouchard; L Gauthier; J Chiquette; Michel Dorval
Journal:  J Genet Couns       Date:  2017-09-15       Impact factor: 2.537

7.  When knowledge of a heritable gene mutation comes out of the blue: treatment-focused genetic testing in women newly diagnosed with breast cancer.

Authors:  B Meiser; V F Quinn; M Gleeson; J Kirk; K M Tucker; B Rahman; C Saunders; K J Watts; M Peate; E Geelhoed; K Barlow-Stewart; M Field; M Harris; Y C Antill; G Mitchell
Journal:  Eur J Hum Genet       Date:  2016-06-22       Impact factor: 4.246

8.  Involvement and Influence of Healthcare Providers, Family Members, and Other Mutation Carriers in the Cancer Risk Management Decision-Making Process of BRCA1 and BRCA2 Mutation Carriers.

Authors:  Athena Puski; Shelly Hovick; Leigha Senter; Amanda Ewart Toland
Journal:  J Genet Couns       Date:  2018-03-29       Impact factor: 2.537

9.  Peer Support and Mentorship in a US Rare Disease Community: Findings from the Cystinosis in Emerging Adulthood Study.

Authors:  Maya Doyle
Journal:  Patient       Date:  2015-02       Impact factor: 3.883

10.  Experience of Norwegian Female BRCA1 and BRCA2 Mutation-Carrying Participants in Educational Support Groups: a Qualitative Study.

Authors:  Marion Myklebust; Eva Gjengedal; Nina Strømsvik
Journal:  J Genet Couns       Date:  2016-04-19       Impact factor: 2.537

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