Date Presented 03/26/20
Neglect is a common impairment following stroke. Currently, there is a lack of evidence regarding the impact of neglect on performance of instrumental activities of daily living, participation, safety, perceived quality of life, and caregiver burden. This study examined the experience of living with poststroke neglect. These findings can help clinicians better understand the long-term needs of stroke survivors with neglect and the daily challenges they face.
Primary Author and Speaker: Emily Grattan
Additional Authors and Speakers: Emerson Hart
Contributing Authors: Nicholas Dean, Brianna Eberl, Hannah Hooks, Lindsay Manning, Katie Schafer, Stacie McLamb
PURPOSE: Post-stroke neglect causes impairments in attention, arousal, and awareness on one side of the body/environment and negatively affects long term outcomes (i.e. greater basic activity of daily living disability)(Riestra & Barrett, 2013). However, there is a lack of evidence regarding the negative impact of neglect on patient independence in instrumental activities of daily living, participation, safety, perceived quality of life, and caregiver burden (Bosma, Nijboer, Caljouw, & Achterberg, 2019; Klinke, Zahavi, Jjaltason, Thorsteinsson, & Jónsdóttir, 2015). Current neglect assessments do not provide sufficient information on these topics and do not capture the extent of challenges stroke survivors with neglect face. Therapists need assessments that will comprehensively measure neglect and the impact of neglect on occupational performance. In order to develop more comprehensive neglect measures, it is critical we better understand the challenges individuals with neglect face in daily life. Thus, our aim is to explore ways individuals with neglect post-stroke experience daily life and to identify key themes shared by these individuals. Our research question is: What challenges do stroke survivors with neglect face in daily life?
DESIGN: We conducted a qualitative descriptive study. Participants were recruited from an academic stroke research registry. Stroke survivors with neglect were eligible to participate if they experienced a unilateral hemispheric stroke, had neglect (Virtual Reality Lateralized Attention Test score <18), were ≥18 years old, and were English speaking. We excluded individuals with severe aphasia (National Institutes of Health Stroke Scale Language Item score ≥2) which could limit participants’ ability to participate in interviews.
METHODS: We conducted semi-structured interviews with stroke survivors with neglect using an established interview guide. Interviews were audio recorded and transcribed via Verbalink. Data were analyzed using manifest and latent trait content analyses by condensing the text and using abstraction to identify emergent themes. Consensus of data abstraction and theme generation was confirmed throughout the process across team members.
RESULTS: Six chronic (mean 30 months post) stroke survivors were included in the study. Participants (4 females) were a mean of 61.6 years old and all had a right hemispheric stroke. Five overarching themes emerged. Preliminary findings indicate that stroke survivors with neglect experience: (1) a loss of meaningful roles related to work and family, (2) difficulty with a wide range of basic/instrumental activities of daily living, (3) negative emotions i.e. frustration, depression, fear (4) safety issues related to driving, injuring oneself/others, and destruction of property and (5) a lack of education regarding the nature and longevity of neglect.
CONCLUSION: These findings underscore the devastating impact of post-stroke neglect on activities and participation in daily life. Findings can help lead to the development of more comprehensive functional assessments for neglect and also highlight the need to develop quality evidence-based education materials on neglect. While data collection involving additional stroke survivors and caregivers is ongoing, these preliminary findings provide an initial step towards understanding the experience of living with neglect.
IMPACT STATEMENT: This study focuses on three priority research areas (functional cognition, safety and injury prevention, and family and caregiver needs) recognized by the American Occupational Therapy Foundation. The findings can help clinicians better understand the long term unmet needs of stroke survivors with neglect and the daily challenges they face.
References
Riestra, A. R., & Barrett, A. M. (2013). Rehabilitation of spatial neglect. Handbook of Clinical Neurology, 110, 347-355.
Bosma, M. S., Nijboer, T. C., Caljouw, M. A., & Achterberg, W. P. (2019). Impact of visuospatial neglect post-stroke on daily activities, participation and informal caregiver burden: A systematic review. Annals of Physical and Rehabilitation Medicine. doi: 10.1016/j.rehab.2019.05.006
Klinke, M. E., Zahavi, D., Hjaltason, H., Thorsteinsson, B., & Jónsdóttir, H. (2015). “Getting the Left Right ”: The Experience of Hemispatial Neglect After Stroke. Qualitative Health Research, 25(12), 1623–1636. doi: 10.1177/1049732314566328
