Exploring the impact of caring for an individual with neurogenic orthostatic hypotension: a qualitative study supplementary materials

Aim: This study aimed to explore the impact of caring for an individual with neurogenic orthostatic

hypotension (nOH). Methods: Informal caregivers of individuals with nOH and either Parkinson’s disease,

multiple system atrophy, pure autonomic failure or dementia with Lewy bodies completed semi-structured

interviews. Data were analyzed using thematic analysis; the identified concepts were used to develop

a conceptual model. Results: Twenty informal caregivers were interviewed. Analysis identified several

areas of caregiver impact due to nOH including impact on their time, particularly a need to supervise

the patient to prevent falls as well as a lack of freedom and negative physical, work and social impacts.

Many reported negative emotional impacts, including worry, stress or fear about the patient falling,

depression and frustration. The conceptual model shows the relationships between concepts. Conclusion:

The results highlight the wide-ranging impact of nOH, and the specific impact of the fear of falls on

informal caregivers’ lives.