开发一种心理社会干预措施，以支持接受血液透析的终末期肾病患者的非正式照护者。
Development of a psychosocial intervention to support informal caregivers of people with end-stage kidney disease receiving haemodialysis.
机构信息
School of Nursing and Midwifery, Queen's University, Medical Biology Centre, 97 Lisburn Road, Belfast, BT9 7BL, UK.
Renal Unit, Northern Health and Social Care Trust, 45 Bush Road, Antrim, BT41 2RL, UK.
出版信息
BMC Nephrol. 2020 Oct 1;21(1):421. doi: 10.1186/s12882-020-02075-2.
BACKGROUND
Patients with end-stage kidney disease, receiving haemodialysis rely increasingly on informal carers to help manage their debilitating chronic disease. Informal carers may experience a negative impact on their quality of life exacting a toll on their physical, social and emotional well-being. Informal carers of patients with end-stage kidney disease receiving haemodialysis have significant unmet needs which may include physical and psychological issues, financial disadvantage and social isolation. Poor experiences of informal carers may also impact the experience of the patients for whom they care. The needs of this group of informal caregivers have been largely neglected, with little emphasis placed on supportive interventions that might assist and support them in their caring role. The aim of this study is therefore to explore the experiences and unmet needs of informal carers of people with end-stage kidney disease receiving haemodialysis and develop a psychosocial intervention to support them in their caring role.
METHODS
This qualitative study will include a systematic review, semi-structured interviews with 30 informal carers and focus groups with renal health care professionals. Perceptions of care provision, caregiving experiences as well as contextual factors impacting the design and delivery of a psychosocial intervention for informal carers of patients with end-stage kidney disease, will be explored and will inform the development of a supportive intervention.
DISCUSSION
The needs of informal carers of patients with end-stage kidney disease have been neglected with little emphasis placed on supportive interventions that might assist and support this group in their care giving role. This is in contrast to other chronic disease groups such as stroke, cancer and dementia. In these conditions well developed supportive interventions have significantly improved outcomes in regard to informal caregivers' preparedness, competence, positive emotions and psychological well-being in terms of informal care provision. Support interventions could potentially improve the quality of life of those informal carers who provide care to patients with end-stage kidney disease receiving haemodialysis.
背景
接受血液透析的终末期肾病患者越来越依赖非正式护理者来帮助管理他们衰弱的慢性疾病。非正式护理者可能会对他们的生活质量产生负面影响，对他们的身体、社会和情感健康造成影响。接受血液透析的终末期肾病患者的非正式护理者有很大的未满足的需求，这些需求可能包括身体和心理问题、经济劣势和社会孤立。非正式护理者的不良体验也可能影响他们所照顾的患者的体验。这一群体的非正式护理者的需求在很大程度上被忽视了，很少有人强调支持性干预措施，以帮助和支持他们在护理角色中的作用。因此，本研究的目的是探讨接受血液透析的终末期肾病患者的非正式护理者的经验和未满足的需求，并开发一种心理社会干预措施来支持他们的护理角色。
方法
本定性研究将包括系统综述、对 30 名非正式护理者的半结构式访谈和与肾脏保健专业人员的焦点小组。将探讨对护理提供的看法、护理经验以及影响设计和提供终末期肾病患者非正式护理者心理社会干预的背景因素，这将为支持性干预措施的发展提供信息。
讨论
终末期肾病患者非正式护理者的需求被忽视了，很少有人强调支持性干预措施，这些干预措施可能会帮助和支持这一群体在他们的护理角色中。这与其他慢性疾病群体如中风、癌症和痴呆症形成对比。在这些情况下，经过充分发展的支持性干预措施显著改善了非正式护理者在准备、能力、积极情绪和心理幸福感方面的结果，从而改善了他们对非正式护理的提供。支持性干预措施有可能改善为接受血液透析的终末期肾病患者提供护理的非正式护理者的生活质量。
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