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I’m happy, considering what I’ve been through : an interpretative phenomenological analysis of quality of life after moderate to severe acute brain injury
Position du problème et objectif(s) de l’étude
In neurocritical care units, decisions to withhold life-sustaining therapies are often influenced by anticipated disability and impaired quality of life (QoL), particularly when further interventions are deemed futile. However, health-related quality of life (HRQoL) is highly subjective and does not always correlate with levels of disability. This study explores the role of QoL in ethical decision-making using Interpretative Phenomenological Analysis (IPA), a method well suited to exploring complex and subjective experiences.
Matériel et méthodes
This study is qualitative and based on IPA, which emphasises subjective lived experience, does not require a specific sample size, and typically involves small samples. This follow-up was conducted by a single intensivist, and then directed the interview towards HRQoL using an interview guide with limited and mostly open-ended questions.The audio recordings were transcribed verbatim into a Word document and analysed by two intensivists using IPA methodology and NVivo 14 software.Through in-depth analysis of the patients' narratives, we explored their lived experiences and personal assessments of QoL.The study protocol was approved by the local ethics committee (IRBN672024/CHUSTE).
Résultats & Discussion
Nine patients were followed up and interviewed two years after their stay in a neurocritical care unit for moderate to severe acute brain injury (ABI). For four of these patients, the initial decision was to withhold life-sustaining treatment. Patients showed great variability in how they perceived and valued their QoL. While most valued relationships and independence, they expressed these values in different ways. Frustration with disability and support from relatives emerged as key motivators for rehabilitation. Despite their challenges, patients expressed gratitude for survival and pride in their progress and daily achievements. Overall, their experiences highlighted the deeply personal and subjective nature of assessing disability and QoL.
Conclusion
This study highlights that HRQoL after ABI is subjective and should not be a factor in withholding life-sustaining treatment in neurocritical care units. Further studies are warranted to improve the outcome assessment after ABI and to aid ethical decision-making.
Auteurs
Marie DAKENG (1) , Pascal ANTOINE (2), Jérôme MOREL (1), Nory ELHADJENE (1) - (1)Department Of Anaesthesiology And Critical Care, Université Jean Monnet, Chu De Saint-Etienne, 42055 Saint-Étienne Cedex 2, France., Saint-Etienne, France, (2)Niv. Lille, Cnrs, Umr 9193-Scalab-Sciences Cognitives Et Sciences Affectives, Lille, France., Lille, France