作者: Emma Rowland , Alison Metcalfe
DOI: 10.1016/J.IJNURSTU.2012.09.002
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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.