生长激素缺乏症护理经历故事：CRESCERE项目
Stories of experiences of care for growth hormone deficiency: the CRESCERE project.
作者信息
Marini Maria G, Chesi Paola, Mazzanti Laura, Guazzarotti Laura, Toni Teresa D, Salerno Maria C, Officioso Annunziata, Parpagnoli Maria, Angeletti Cristina, Faienza Maria F, Iezzi Maria L, Aversa Tommaso, Sacchetti Cinzia
机构信息
ISTUD Foundation, Health Care & Wellbeing Area, Milan, Italy; ISTUD Foundation, Health Care & Wellbeing Area, Milan, Italy.
Paediatric Endocrinology Unit, Paediatric Department 'Sant'Orsola Malpighi' University Hospital, Bologna, Italy; Paediatric Endocrinology Unit, Paediatric Department 'Sant'Orsola Malpighi' University Hospital, Bologna, Italy.
出版信息
Future Sci OA. 2016 Feb 25;2(1):FSO82. doi: 10.4155/fso.15.82. eCollection 2016 Mar.
AIMS
Growth hormone deficiency therapy is demanding for patients and caregivers. Teams engaged in the clinical management of growth hormone deficiency therapy need to know how families live with this condition, to provide an adequate support and prevent the risk of withdrawal from therapy.
METHODS
Using Narrative Medicine, testimonies from patients, their parents and providers of care were collected from 11 Italian centers. Narrations were analyzed throughout an elaboration of recurring words and expressions.
RESULTS
Although care management and outcomes were considered satisfying in the 182 collected narratives, recurring signals of intolerance among adolescents and the worry of not being well informed about side effects among parents are open issues.
CONCLUSION
Narratives found that communication issues could decrease adherence and influence the physicians' clinical practice.
目的
生长激素缺乏症治疗对患者及其照料者来说要求很高。参与生长激素缺乏症治疗临床管理的团队需要了解家庭如何应对这种疾病，以便提供充分的支持并防止治疗中断的风险。
方法
运用叙事医学，从11个意大利中心收集了患者、其父母及护理提供者的证词。通过对反复出现的词汇和表达进行详细阐述来分析这些叙述。
结果
尽管在收集的182份叙述中，护理管理和结果被认为是令人满意的，但青少年中反复出现的不耐受迹象以及父母对未充分了解副作用的担忧仍是未解决的问题。
结论
叙述发现沟通问题可能会降低依从性并影响医生的临床实践。
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