Kimbell Barbara, Boyd Kirsty, Kendall Marilyn, Iredale John, Murray Scott A
Primary Palliative Care Research Group, Centre of Population Health Sciences, The University of Edinburgh, Edinburgh, UK.
Royal Infirmary of Edinburgh, Edinburgh, UK.
BMJ Open. 2015 Nov 19;5(11):e009241. doi: 10.1136/bmjopen-2015-009241.
To understand the experiences and support needs of people with advanced liver disease and those of their lay and professional carers to inform improvements in the supportive and palliative care of this rapidly growing but currently neglected patient group.
Multiperspective, serial interviews. We conducted up to three qualitative in-depth interviews with each patient and lay carer over 12 months and single interviews with case-linked healthcare professionals. Data were analysed using grounded theory techniques.
Patients with advanced liver disease of diverse aetiologies recruited from an inpatient hepatology ward, and their lay carers and case-linked healthcare professionals nominated by the patients.
Primary and secondary care in South-East Scotland.
37 participants (15 patients, 11 lay and 11 professional carers) completed 51 individual and 13 joint patient-carer interviews. Nine patients died during the study. Uncertainty dominated experiences throughout the course of the illness, across patients' considerable physical, psychological, social and existential needs and affected patients, lay carers and professionals. This related to the nature of the condition, the unpredictability of physical deterioration and prognosis, poor communication and information-sharing, and complexities of care. The pervasive uncertainty also shaped patients' and lay carers' strategies for coping and impeded care planning. While patients' acute medical care was usually well coordinated, their ongoing care lacked structure and focus.
Living, dying and caring in advanced liver disease is dominated by pervasive, enduring and universally shared uncertainty. In the face of high levels of multidimensional patient distress, professionals must acknowledge this uncertainty in constructive ways that value its contribution to the person's coping approach. Pervasive uncertainty makes anticipatory care planning in advanced liver disease challenging, but planning 'just in case' is vital to ensure that patients receive timely and appropriate supportive and palliative care alongside effective management of this unpredictable illness.
了解晚期肝病患者及其非专业和专业护理人员的经历与支持需求，为改善对这一快速增长但目前被忽视的患者群体的支持性和姑息性护理提供参考。
多视角系列访谈。我们在12个月内对每位患者和非专业护理人员进行了多达三次定性深入访谈，并对与病例相关的医疗保健专业人员进行了单次访谈。采用扎根理论技术对数据进行分析。
从住院肝病病房招募的病因各异的晚期肝病患者及其非专业护理人员，以及患者提名的与病例相关的医疗保健专业人员。
苏格兰东南部的初级和二级医疗保健机构。
37名参与者（15名患者、11名非专业护理人员和11名专业护理人员）完成了51次个人访谈以及13次患者与护理人员的联合访谈。9名患者在研究期间死亡。在整个疾病过程中，不确定性主导着患者的经历，涉及患者在身体、心理、社会和生存方面的诸多需求，并影响着患者、非专业护理人员和专业人员。这与疾病的性质、身体恶化和预后的不可预测性、沟通和信息共享不畅以及护理的复杂性有关。普遍存在的不确定性也塑造了患者和非专业护理人员的应对策略，并阻碍了护理计划的制定。虽然患者的急性医疗护理通常协调良好，但他们的持续护理缺乏条理和重点。
晚期肝病患者的生存、死亡和护理过程中普遍存在着持久且共同的不确定性。面对患者高度的多维度痛苦，专业人员必须以建设性的方式承认这种不确定性，重视其对患者应对方式的影响。普遍存在的不确定性使得晚期肝病的前瞻性护理计划具有挑战性，但“以防万一”的计划对于确保患者在有效管理这种不可预测的疾病的同时获得及时、适当的支持性和姑息性护理至关重要。
