Patients' and families' experiences following prolonged critical illness : a narrative inquiry spanning intensive care to the first year at home : a thesis presented in partial fulfilment of the requirements for the degree of Doctor of Philosophy in Nursing at Massey University, Wellington, New Zealand

Abstract

𝗔𝗶𝗺: Explore survivors’ experiences of prolonged critical illness, and their families, across the full care trajectory, from intensive care admission through the first year after returning home from hospital. 𝗕𝗮𝗰𝗸𝗴𝗿𝗼𝘂𝗻𝗱: Prolonged critical illness is profoundly stressful for patients and families. Despite extensive research on diagnostic outcomes following critical illness, there is limited understanding of how a prolonged critical illness influences the lives of survivors and their families. 𝗥𝗲𝘀𝗲𝗮𝗿𝗰𝗵 𝗗𝗲𝘀𝗶𝗴𝗻: Narrative Inquiry was used to follow the first year of ICU survivorship, as told by five patients and five family members (10 participants). 𝗗𝗮𝘁𝗮 𝗖𝗼𝗹𝗹𝗲𝗰𝘁𝗶𝗼𝗻 𝗮𝗻𝗱 𝗔𝗻𝗮𝗹𝘆𝘀𝗶𝘀: Participants were interviewed four times during the first year following hospital discharge. Transcribed data were analysed using the three-dimensional narrative inquiry framework and thematic analysis. 𝗙𝗶𝗻𝗱𝗶𝗻𝗴𝘀: Through longitudinal data analysis, common themes and subthemes emerged pertaining to specific time periods and places in the participants’ journeys. For patients, the first theme, 𝘉𝘦𝘪𝘯𝘨 𝘰𝘶𝘵 𝘰𝘧 𝘤𝘰𝘯𝘵𝘳𝘰𝘭, portrayed their experiences of the ICU. The second theme, 𝘜𝘯𝘮𝘦𝘵 𝘯𝘦𝘦𝘥𝘴, revealed their experiences of the general hospital ward. The third theme, 𝘈 𝘺𝘦𝘢𝘳 𝘰𝘧 𝘵𝘦𝘯𝘥𝘪𝘯𝘨 𝘵𝘰 𝘵𝘩𝘦 𝘴𝘦𝘭𝘧, captured their year-long journey. For families, the first theme, Being on life’s edges in a world of uncertainty, portrayed their experiences of the ICU. The second theme, 𝘞𝘩𝘦𝘳𝘦 𝘪𝘴 𝘵𝘩𝘦 𝘤𝘢𝘳𝘦?, revealed their experiences of the general hospital ward. The third theme, 𝘕𝘢𝘷𝘪𝘨𝘢𝘵𝘪𝘯𝘨 𝘯𝘦𝘸 𝘳𝘦𝘢𝘭𝘪𝘵𝘪𝘦𝘴 𝘢𝘭𝘰𝘯𝘦 𝘢𝘯𝘥 𝘪𝘯 𝘵𝘩𝘦 𝘥𝘢𝘳𝘬, reflected their struggles across the first year at home. 𝗖𝗼𝗻𝗰𝗹𝘂𝘀𝗶𝗼𝗻(𝘀): The impact of a prolonged critical illness on the patient and their family is immense and life changing. Both parties experience a continuum of vulnerability that begins in the ICU and endures long after hospital discharge. This ongoing vulnerability reflects systemic shortcomings and exists within a fragmented healthcare system where no one fully grasps or accompanies them through the entire journey. To address these gaps a person-centred, navigated model of care is needed that includes structured ICU follow-up, dedicated post-intensive care syndrome support for both patients and families, access to a continuum of specialised rehabilitation, and dedicated nursing.