Abstract：
Pulmonary Fibrosis (PF) describes a group of lung diseases characterised by progressive scarring (fibrosis). Symptoms worsen over time and include breathlessness, tiredness, and cough, giving rise to psychological distress. Significant morbidity accompanies PF, so ensuring patients\' care needs are well defined and provided for, represents an important treatment strategy. The purpose of this systematic review was to synthesise what is currently known about the psychosocial morbidity, illness experience and needs of people with pulmonary fibrosis and their informal caregivers. Eight databases (MEDLINE, EMBASE, PUBMED, Cochrane database of Systematic reviews (CDSR), Web of Science Social Sciences Citation Index, PsycINFO, PsycARTICLES and CINAHL) were used to identify studies exploring the supportive needs of adults with PF and/or their caregivers. Methodological quality was assessed using the Mixed Methods Appraisal Tool. 53 studies were included, the majority using qualitative methodology (79 %, 42/53), 6 as part of mixed methodological studies. Supportive care needs were mapped to eight domains using an a priori framework analysis. Findings highlight a lack of psychological support throughout the course of the illness, misconceptions about and barriers to, the provision of palliative care despite its potential positive impacts. Patients and caregivers express a desire for greater disease specific education and information provision throughout the illness. Trials of complex interventions are needed to address the unique set of challenges for patients and carers living with PF.
摘要：
肺纤维化(PF)描述了一组以进行性瘢痕形成(纤维化)为特征的肺部疾病。随着时间的推移，症状会恶化，包括呼吸困难，疲倦,咳嗽,引起心理困扰。严重的发病率伴随着PF，因此，确保患者的护理需求得到明确定义和提供，是一种重要的治疗策略。本系统综述的目的是综合目前对心理社会发病率的了解，肺纤维化患者及其非正式护理人员的疾病经验和需求。八个数据库(MEDLINE，EMBASE,pubmed,Cochrane系统评价数据库(CDSR)，WebofScience社会科学引文索引,PsycINFO,Psycarticles和CINAHL）用于确定探索患有PF的成年人和/或其照顾者的支持需求的研究。使用混合方法评估工具评估方法学质量。包括53项研究，大多数使用定性方法(79%，42/53),6作为混合方法学研究的一部分。使用先验框架分析将支持性护理需求映射到八个领域。研究结果强调了在整个疾病过程中缺乏心理支持，误解和障碍，提供姑息治疗，尽管其潜在的积极影响。患者和护理人员表示希望在整个疾病期间提供更多的针对疾病的教育和信息。需要进行复杂干预措施的试验，以解决患有PF的患者和护理人员面临的独特挑战。
