近几年来，随着国内外药物研发，医疗救助事业的推进，我国在血友病治疗领域取得
了一些进展，但依旧无法改变许多家庭因病返贫的现状，家庭承受来自各方面的压力。不
少家庭因无法应对这些压力而导致家庭失序破裂，但同样是面对困境，有些家庭却能正常
运行，并且在此过程中培养和发挥出家庭的能力，这一现状值得深思与探索。因此，了解
当前患儿家庭压力来源、家庭抗逆力的现状，并分析两者的关系来探索提升家庭抗逆力的
途径是十分有必要的。
本文依托血友病关爱中心，对 10 户家庭进行半结构式的深入访谈，在访谈中基于心
理、生理、社会交往等维度来展现家庭的压力来源，并通过生态系统理论进行分类梳理。
其次采用 Walsh 的家庭抗逆力理论，将家庭抗逆力划分为家庭信念系统、家庭沟通、家庭
组织模式，由此来判断家庭如何运用自身的优势和资源应对困境。研究发现患者家庭面临
多重的压力，包括但不限于治疗康复、经济支出、社会参与、就学就业等。在家庭抗逆力
方面，将收集到的访谈资料进行分类总结，对比发现家庭信念系统中积极应对型家庭、家
庭沟通中积极沟通型的家庭抗逆力更强；家庭组织模式中包含了家庭结构、家庭内外资源
组织，性别合理分工的核心家庭与代际合作的主干家庭这两种家庭结构的抗逆力更强，在
调动资源方面，绝大部分家庭都欠缺利用外部资源的能力。
社会工作在进行相关的实务工作时，要采取预防加干预的救助思路，整合内外部资源，
把握普适性规则时，也要重视个性需求，在此基础上，从生态系统的四个层面介入，采用
个案、小组、社区等专业工作方法，基于大部分家庭在获取外部资源方面的欠缺，社会工
作者尤其要发挥政策倡导者、资源链接者的功能，推动相关政策的落地实施，链接各方资
源，以期实现家庭抗逆力的提升，缓解患儿家庭压力提升幸福感，进而促进社会稳定发展。

In recent years, with the advancement of drug research and medical assistance at home and abroad, China has made some progress in the field of hemophilia treatment, but it still can not change the current situation of many families returning to poverty due to illness, and families are under pressure from all aspects. Many families are unable to cope with these pressures and lead to family disorder and rupture, but some families can operate normally, and cultivate the family's ability in this process. This current situation is worthy of reflection and exploration. Therefore, it is necessary to understand the current situation of family stress resistance and analyze the source of family stress resistance.
Based on hemophilia care center, this paper conducted semi-structured in-depth interviews with 10 families. In the interview, the sources of family pressure were shown based on the dimensions of psychology, physiology and social communication, and classified through ecosystem theory. Secondly, using Walsh's family resilience theory, family resilience is divided into family belief system, family communication and family organization model, so as to judge how families use their own advantages and resources to deal with difficulties. The study found that patients' families face multiple pressures, including but not limited to treatment and rehabilitation, economic expenditure, social participation, schooling and employment, etc. In terms of family resilience, the collected interview data are classified and summarized. It is found that the resilience of positive coping families in family belief system and positive communication families in family communication is stronger; The family organization model includes family structure, resource organization inside and outside the family, the core family with reasonable gender division of labor and the backbone family with intergenerational cooperation have stronger resilience. In terms of mobilizing resources, most families lack the ability to use external resources.
When carrying out relevant practical work, social work should adopt the rescue idea of
prevention and intervention, integrate internal and external resources, and pay attention to individual needs when grasping universal rules. On this basis, social workers should intervene from the four levels of ecosystem and adopt professional working methods such as case, group and community. Based on the lack of access to external resources of most families, social workers should especially play the role of policy advocates The function of resource linker to promote the implementation of relevant policies and link the resources of all parties, so as to improve the family resilience, alleviate the family pressure of children, improve the sense of happiness, and then promote the stable development of society.