Self-help groups--United States; Caregivers--United States; Cerebrovascular disease--Patients--United States; Medical personnel--caregiver relationships
Participation in a formal support group can be an effective way to reduce caregiver burden, providing caregivers with a way to share information and ideas, as well as connect with others who share similar experiences. Occasionally, informal support groups will develop spontaneously when caregivers are gathered together, such as waiting for their family members’ therapy appointments. Very little is known about the formation and benefits of informal supports groups, which may be valuable to caregivers in unique ways. This study used a qualitative phenomenological approach to investigate the lived experience of three client family members during their time in the waiting room of an on-campus, occupational therapy and physical therapy student clinic, in order to gain a better understanding of the experience of caregivers of stroke survivors and the role of informal support groups. Data were collected from caregivers of stroke survivors via one, 60-minute focus group. The themes that emerged regarding caregiver experience of life after stroke included 1) Daily Life and Future Plans Were Altered, Disrupted, or Lost, 2) Friends Wanted to Help But Rarely Understood, and 3) Caregivers’ Emotional Well-Being was Challenged after Stroke. Themes that emerged regarding the role of informal support groups included 4) Friendships Based on Shared Experiences, 5) Shared Information from Others in the Same Boat, and 6) Social Comparisons Can be Helpful or Discouraging. This information may be helpful to occupational therapists and other healthcare professionals by providing them with ways to facilitate formation of informal support groups and encouraging holistic care that considers not only the client but also the context and environment that impact the client’s well-being.
Anne Birge James, PhD, OTR/L
Date of Completion
Master of Science in Occupational Therapy (MSOT)
Date of Award
University of Puget Sound