The Dignity of Patients with Palliative Needs : Patients’ and Family Caregivers’ Perspective in Lebanon

Dakessian Sailian, Silva and Preston, Nancy and Salifu, Yakubu (2022) The Dignity of Patients with Palliative Needs : Patients’ and Family Caregivers’ Perspective in Lebanon. PhD thesis, Health Research.

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Abstract

Introduction Preserving patient dignity is an overarching tenet in palliative care. Though patient dignity and its multiple facets have been studied in Western societies, interpretations of dignity may change depending on the context influenced by socio-cultural, and political circumstances, ensuing in different meanings and implications. Aim To explore the interpretations of the concept of dignity perceived by patients with palliative care needs and family caregivers within the Lebanese context. Method 1. An integrative review to explore and synthesise evidence on the understanding of dignity in the Middle Eastern palliative care context. 2. A qualitative interview study with fourteen patients with palliative needs and fifteen family caregivers to understand how dignity is interpreted and preserved in illness. The data were analysed inductively using reflexive thematic analysis. The findings from the two groups of participants were compared against each other and with the Chochinov Model of dignity. Findings Most of the findings from the integrative review came from Iran. Seven themes were developed: Maintaining privacy and secrecy; Gentle communication to preserve hope for wellbeing; Financial stability and accessibility of medical supplies; Family Support; Physical Fitness; Reliable health care, and Social justice that endorses equal care to all. Patients’ and family caregivers’ interviews revealed four common themes about maintaining dignity: a) The importance of faith b) The need to preserve physical, social, and mental wellbeing c) The central role of family d) Compassionate health care. These findings were similar to the themes synthesised from the integrative review highlighting the impact of context in understanding dignity. When comparing the findings to the Chochinov Model of Dignity, preserving outer physical appearance, equitable and affordable care and health resources were two new subthemes that surfaced as necessary for maintaining dignity during illness. Faith and family support emerged as central findings anchoring patient dignity. On the other hand, Autonomy and Aftermath concerns, themes mentioned in the Chochinov Model, appeared to be of less importance in this participant group. Conclusion In contrast to Western countries, faith and family ties in Lebanon are central in understanding and maintaining dignity for patients with palliative needs. This study demonstrates that cultural values and the overall socio-economic and political environment shape patients’ interpretations of dignity, resulting in implications for policy, clinical practice, community initiatives, and education.