Abstract
The purpose of this phenomenological study was to gain insight into the caregiver stress experience when assisting with activities of daily living (ADL) for a person with a stroke. Caregivers reported physical and emotional or psychological stressors related to providing ADL assistance during the occupation of caregiving and requested more support at home. OT practitioners are uniquely suited to address the support needs of caregivers and have the potential to make a positive impact on their lives.
Primary Author and Speaker: Mary Thomas
Additional Authors and Speakers: Julie Watson
Stroke is a complex ailment impacting a person physically, mentally, and emotionally. Caring for a stroke survivor is challenging for most caregivers due to the stroke survivors’ need for assistance with ADL (Em et al., 2017; Rigby et al., 2009). There is a lack of literature describing the stressful aspects of performing ADL and why caregivers experience certain activities as stressful. The purpose of this study is to learn more about the experience of performing stressful ADL occupations as a caregiver for a person following a stroke to inform occupational therapy (OT) interventions for caregivers of stroke survivors.
A phenomenological approach was used to develop an understanding of the lived experience of performing stressful caregiving activities. Participants were recruited via purposive sampling from community-based stroke outreach programs. The inclusion criteria for the study were: (a) age 18 or older, (b) primary caregiver for a person with a diagnosis of stroke, (c) providing care for >1 year, and (d) residing in the same residence as the care recipient. Ten participants were recruited, six females and four males. The mean age of participants was 62.3 years (age range = 57-74 years). Five caregivers were spouses/partners, two were sisters, three were daughters. The duration of caregiving ranged between 1 to 4 years.
IRB approval was obtained, and a written consent form was signed prior to the interviews. Confidentiality was maintained using pseudonyms. Audio recordings and transcripts were stored in a locked cabinet and on a password protected computer. Interviews were conducted and audio recorded in private rooms at the stroke outreach program sites. A semi-structured interview guide was used for focusing the interview, but also allowing flexibility. Recordings were transcribed verbatim and verified by the interviewer. Interview transcripts were read several times to find and save statements and/or phrases related to the phenomenon and/or experience of interest. Next, themes and sub-themes were identified.
Two major themes, representing the experience of caregivers when performing stressful activities were found. The theme, Physical Stress, describes difficulties caregivers experienced with physical aspects of helping the care recipient during ADL activities including subthemes of exhaustion, fatigue, and injury. The theme, Emotional/Psychological Stress, explores the different emotions experienced by caregivers including fear of hurting themselves or the care recipient during ADL, fear of not managing medications properly, and not knowing how to help the care recipient, for example not remembering the correct sequencing for ADL.
The findings reveal that caregivers experience both physical and emotional/psychological stress when performing stressful ADL occupations as a caregiver for a person following a stroke. Though in most settings caregivers have training from OT practitioners to assist the care recipient, caregivers explained that things were different when they were discharged home. Caregivers felt that they needed more support to manage the tasks of caregiving on their own. This study is important to occupational science and occupational therapy practice because it offers context about the feelings of caregivers when performing caregiving occupations. These results will likely exert a powerful influence on practice because therapists can refine caregiver interventions to potentially decrease the stresses that caregivers experience. Occupational therapy practitioners are uniquely suited to address the support needs of caregivers and have the potential to make a positive impact on their lives.
Em, S., Bozkurt, M., Caglayan, M., Ceylan Cevik, F., Kaya, C., Oktayoglu, P., & Nas, K. (2017). Psychological health of caregivers and association with functional status of stroke patients. Topics in Stroke Rehabilitation, 24(5), 323-329. doi: 10.1080/10749357.2017.1280901.
Rigby, H., Gubitz, G., Eskes, G., Reidy, Y., Christian, C., Grover, V., Phillips, S. (2009). Caring for stroke survivors: baseline and 1-year determinants of caregiver burden. International Journal of Stroke, 4(3), 152-158. doi: 10.1111/j.1747-4949.2009.00287.x.