Living with idiopathic normal pressure hydrocephalus : exploring older adults’ experiences from a stress and coping lens

Idiopathic normal pressure hydrocephalus (iNPH) is a complex neurological condition affecting older adults, characterized by impaired gait and balance, urinary incontinence, and cognitive impairment associated with enlarged cerebral ventricles. Living with iNPH is challenging, as symptoms are often misattributed to aging or other health conditions, leading to delayed diagnosis and progressive physical decline. Current research primarily utilizes standardized self-report measures to assess clinical outcomes and quality of life, limiting understanding of patients’ experiences throughout their care. Although stress and coping frameworks are commonly used in health-related research, they have not been applied in iNPH research despite their potential to reveal how individuals respond to this condition. The purpose of this research was to examine the perceptions and experiences of individuals with iNPH across the diagnostic and treatment journey and explore the appraisal and coping processes that shaped these experiences. 11 adults aged 69 to 84 diagnosed with and treated for iNPH participated in two semi-structured interviews. Using reflexive thematic analysis, three themes and 21 subthemes emerged across three time points: symptom onset, diagnosis and surgical treatment, and recovery. At symptom onset, participants normalized ambiguous symptoms and experienced a loss of independence that affected close relationships. As symptoms progressed, participants coped by adopting assistive devices to support mobility. During diagnosis and surgical treatment, clinicians initially interpreted symptoms differently; some participants received timely iNPH diagnoses, while others experienced delays because symptoms were attributed to aging or other conditions. An appropriate iNPH diagnosis provided clarity and fostered an action-oriented mindset toward treatment. Surgical decision-making was shaped by trust in healthcare providers, a desire to improve quality of life, and engagement with online resources. During recovery, experiences were non-linear and context-dependent, characterized by ongoing mobility management and engagement with structured support. Overall, experiences of iNPH are shaped not only by symptom progression but also by how individuals interpret and respond to symptoms at different stages. Across the care trajectory, individuals may use various strategies to navigate uncertainty and adapt to functional changes. This study underscores the importance of patient-centred approaches that ensure individuals feel supported and confident in managing the complexities of iNPH.