Objective: This study aimed to explore the impact of caring for an individual with neurogenic orthostatic hypotension (nOH) through qualitative interviews with informal caregivers and to illustrate the impact in a conceptual model.
nOH can cause symptoms such as light-headedness, dizziness, blurry vision and loss of consciousness, and typically occurs in neurodegenerative conditions causing primary autonomic failure. To date little is known about the specific impact of nOH on informal caregivers’ health-related quality of life.
Caregivers of individuals with a confirmed diagnosis of nOH and either Parkinson’s disease (PD), multiple system atrophy (MSA), pure autonomic failure (PAF) or dementia with Lewy bodies (DLB) were recruited in the USA. Participants completed a background form and semi-structured interviews were conducted by telephone. Qualitative data were analyzed using thematic analysis; the identified concepts were used to develop a conceptual model. Background data were summarized descriptively.
Twenty caregivers were interviewed; the majority were female (70%), mean age 78 years and cared for their spouse (65%) or parent (30%). Most care recipients had PD (70%) and 70% were prescribed treatment for their nOH. Thematic analysis identified several areas of impact on caregivers’ lives due to nOH. All participants reported impact on their time, particularly a need to supervise the patient to prevent falls. Many reported negative emotional impacts, including worry, anxiety, stress or fear about the patient falling, depression, and frustration. Other areas of impact included physical effects, such as tiredness or pain due to caregiving, a positive or negative impact on relationships, impact on work, a lack of freedom or independence, and limited opportunities for social and leisure activities. The conceptual model shows the relationships between concepts, such as lack of freedom due to supervising the patient having a negative impact on caregivers’ work, emotions, relationships, and social/leisure activities.
To our knowledge, this is the first qualitative study to explore the impact of nOH on informal caregivers. Results highlight the wide-ranging negative impact of nOH, and the specific impact of the fear of falls on caregivers’ anxiety and need to supervise.
To cite this abstract in AMA style:K. Gallop, N. Pham, G. Maclaine, E. Saunders, B. Black, S. Acaster. A qualitative evaluation of the health-related quality of life impact on informal caregivers to patients with neurogenic orthostatic hypotension [abstract]. Mov Disord. 2021; 36 (suppl 1). https://www.mdsabstracts.org/abstract/a-qualitative-evaluation-of-the-health-related-quality-of-life-impact-on-informal-caregivers-to-patients-with-neurogenic-orthostatic-hypotension/. Accessed December 5, 2023.
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