American University of Beirut, Hariri School of Nursing, Riad El Solh, PO Box: 11 0236, Beirut, 1107, 2020, Lebanon.
International Observatory on End-of-Life Care, Division of Health Research, Faculty of Health and Medicine, Lancaster University, Sir John Fisher Drive, Lancaster, LA1 4YW, UK.
BMC Palliat Care. 2024 Jun 7;23(1):142. doi: 10.1186/s12904-024-01478-4.
Dignity is integral to palliative care. Illness can diminish it, causing hopelessness and the wish to hasten death. Yet, dignity is a complex multidimensional phenomenon, influenced by values and context. Understanding its varying interpretations can inform practice and policy. The aim of the study is to explore the understanding of dignity in adult patients with palliative care needs from a Lebanese perspective and how it is preserved during illness and while receiving health services.
Qualitative interview study underpinned with a social constructionist lens. Fourteen patients recruited from home-based hospice and outpatient clinics in Lebanon. Data analysed using reflexive thematic analysis.
Four themes were developed across all the interviews: (a) Dignity anchored through faith in God and religious practices; (b) Family support in maintaining physical, psychological wellbeing, and social connectedness; (c) Physical fitness, mental acuity, and healthy appearance through which patients may escape the stigma of disease, (d) accessible, equitable, and compassionate healthcare.
Dignity is elusive and difficult to define but faith and religious beliefs play a significant contribution in this study. For the participants, illness is seen as a natural part of life that does not necessarily diminish dignity, but it is the illness related changes that potentially affect dignity. Findings show the importance of family and children in preserving dignity during illness and how their active presence provide a sense of pride and identity. Participants aspired to restore physical, social, and mental well-being to reclaim their dignity and normalize their lives. Challenges related to physical appearance, memory loss, vitality, and social stigma associated with illness diminished dignity. Accessible, equitable and compassionate healthcare services are also crucial in preserving dignity. Participants valued clear communication, respect, and empathy from healthcare providers and identified affordability of care essential for maintaining dignity.
Faith in God, and strong family ties are dominant elements to maintaining dignity in the Lebanese context. Relational connectedness with family, children or God is also a need in maintaining dignity in other communal countries with variations in emphasis. The study indicates that religious and cultural context shapes the needs and perceptions of dignity during illness. These findings are likely to be transferable to many Middle Eastern countries but also countries with strong religious and family ties globally.
尊严是姑息治疗的一个组成部分。疾病会削弱尊严，导致绝望和加速死亡的愿望。然而，尊严是一个复杂的多维现象，受到价值观和背景的影响。理解其不同的解释可以为实践和政策提供信息。本研究的目的是从黎巴嫩的角度探讨有姑息治疗需求的成年患者对尊严的理解，以及在患病和接受卫生服务时如何维护尊严。
以社会建构主义视角为基础的定性访谈研究。从黎巴嫩的家庭临终关怀和门诊诊所招募了 14 名患者。使用反思性主题分析对数据进行分析。
所有访谈都得出了四个主题：（a）通过对上帝的信仰和宗教实践来锚定尊严；（b）家庭支持保持身体、心理和社会联系；（c）身体健康、头脑敏锐和健康的外表，使患者能够避免疾病的耻辱；（d）获得可及、公平和富有同情心的医疗保健。
尊严是难以捉摸和难以定义的，但信仰和宗教信仰在本研究中起着重要的作用。对参与者来说，疾病被视为生命的自然组成部分，不一定会降低尊严，但与疾病相关的变化可能会影响尊严。研究结果表明，家庭和孩子在患病期间维护尊严的重要性，以及他们的积极存在如何提供自豪感和身份认同感。参与者渴望恢复身体、社会和心理健康，以恢复尊严，使生活正常化。与疾病相关的身体外貌、记忆力下降、活力丧失和社会耻辱感等挑战会降低尊严。可及、公平和富有同情心的医疗保健服务对维护尊严也至关重要。参与者重视医疗保健提供者的清晰沟通、尊重和同理心，并认为医疗保健的可负担性对维护尊严至关重要。
在黎巴嫩背景下，对上帝的信仰和强大的家庭纽带是维护尊严的主要因素。与家人、孩子或上帝的关系也是在其他具有不同侧重点的社区国家维护尊严的一种需要。研究表明，宗教和文化背景塑造了患病期间对尊严的需求和看法。这些发现可能适用于许多中东国家，但也可能适用于全球具有强烈宗教和家庭纽带的国家。
