Communicating inherited genetic risk between parent and child: A meta-thematic synthesis

作者: Emma Rowland , Alison Metcalfe

DOI: 10.1016/J.IJNURSTU.2012.09.002

关键词:

摘要: Abstract Objectives Communicating genetic risk is a distressing process for families affected by inherited conditions. This systematic review identifies and explores the challenges faced parents their (non)affected or at children caused (non)disclosure of information. Design Qualitative meta-synthesis thematic analysis. Data sources Ovid databases; ‘in progress', British Nursing Index, Embase, Medline Psychinfo were combined with searches EBSCOhost CINAHL ERIC Web science ZETOC databases using truncations communication, chronic illness disease words relating to family specific conditions; Cystic Fibrosis, Duchenne Muscular Dystrophy, Familial Adenomatous Polyposis, Hereditary Non-polyposis Colorectal Cancer, Huntington's Disease, Neurofibromatosis Sickle Cell Anaemia. was augmented free Internet hand an exploration bibliographies all included papers. Review method All papers quality assessed ascertain research methodological rigour. Results A total 2033 citations retrieved. Following removal duplicates, irrelevant articles application inclusion criterion, 12 remained. further three omitted due poor leaving nine which focussed on disclosure information between parent child ( Conclusion Disclosure within highly complex affective often resulting in delayed disclosure. can lead increased tensions generated misunderstanding, blame secrecy. Early, age appropriate better prepare future considerations such as care planning reproductive decision-making. It also contributes effective coping strategies that promote enhanced adaptation emotional well being. Early reduces parental anxieties concerning from unwitting source. Research shows young people want engage open honest discussions about condition. Therefore help facilitate communication health professionals should provide centred informational support.

参考文章(31)
Kenneth P. Tercyak, Randi Streisand, Beth N. Peshkin, Caryn Lerman, Psychosocial Impact of Predictive Testing for Illness on Children and Families: Challenges for a New Millennium Journal of Clinical Psychology in Medical Settings. ,vol. 7, pp. 55- 68 ,(2000) , 10.1023/A:1009597303743
Lucy Yardley, David F. Marks, Research Methods for Clinical and Health Psychology ,(2003)
Helene Joffe, Lucy Yardley, Content and thematic analysis In: Research methods for clinical and health psychology. (pp. 56-68). Sage: London. (2004). ,(2003)
A Delespesse, E Van Cutsem, G Haelterman, Alex Kartheuser, M Renson, De Hoe, E Claes, Psychological implications of living with familial adenomatous polyposis. Acta Gastro-enterologica Belgica. ,vol. 74, pp. 438- 444 ,(2011)
Alison Metcalfe, Jane Coad, Gill M Plumridge, Paramjit Gill, Peter Farndon, Family communication between children and their parents about inherited genetic conditions: A meta-synthesis of the research European Journal of Human Genetics. ,vol. 16, pp. 1193- 1200 ,(2008) , 10.1038/EJHG.2008.84
Allyn McConkie-Rosell, Elizabeth Melvin Heise, Gail A. Spiridigliozzi, Genetic risk communication: experiences of adolescent girls and young women from families with fragile X syndrome. Journal of Genetic Counseling. ,vol. 18, pp. 313- 325 ,(2009) , 10.1007/S10897-009-9215-2
Alison Metcalfe, Gill Plumridge, Jane Coad, Andrew Shanks, Paramjit Gill, Parents’ and children's communication about genetic risk: a qualitative study, learning from families’ experiences European Journal of Human Genetics. ,vol. 19, pp. 640- 646 ,(2011) , 10.1038/EJHG.2010.258
Tiffani A. DeMarco, Beth N. Peshkin, Heiddis B. Valdimarsdottir, Andrea F. Patenaude, Katherine A. Schneider, Kenneth P. Tercyak, Role of Parenting Relationship Quality in Communicating about Maternal BRCA1/2 Genetic Test Results with Children Journal of Genetic Counseling. ,vol. 17, pp. 283- 287 ,(2008) , 10.1007/S10897-007-9147-7
Laura E Forrest, Lisette Curnow, Martin B Delatycki, Loane Skene, MaryAnne Aitken, Health first, genetics second: exploring families' experiences of communicating genetic information European Journal of Human Genetics. ,vol. 16, pp. 1329- 1335 ,(2008) , 10.1038/EJHG.2008.104