For over 30 years, Enid Cox has worked in program development, research and direct service for and with elderly individuals who have become disabled due to physical conditions. In recent years she has worked on studies involving empowerment-oriented research and interventions specifically focused on older stroke survivors.

During the past decade I have had the good fortune to learn about issues related to stroke from physicians, social workers, nurses, physical therapists, occupational therapists, and other social and health care providers. However, learning from stroke survivors has been the most important source of knowledge regarding the experience of coping with stroke-related changes in ability. The wisdom drawn from direct experience has been invaluable to professionals wishing to be of assistance, and to other stroke survivors facing the challenges of quality of life as a result of stroke.

A review of services available to stroke survivors has made it painstakingly clear that few psychosocial and/or physical and occupational therapy services are financially available for many stroke survivors during the sometimes lifelong recovery and relearning period following release from critical care. Changes in physical and/or mental ability are often left for stroke survivors and their family and friends to address. Research conducted by staff and students from the University of Denver Institute of Gerontology has allowed for the accumulation of insights “from the perspective of stroke survivors” regarding ways they achieve the highest possible quality of life, while coping with disabilities related to stroke. Information was gathered from in-depth interviews and from intervention work with more than 100 stroke survivors.

Survivors identified several of the changes that have affected their quality of life, including: Physical limitations; limitations in recreational and other social activities; driving limitations; negative changes in interpersonal relationships; changes in memory; sense of helplessness; loss of work and fear of additional strokes. The most common challenges were those related to physical ability and social limitations.

Coping with increased dependence on others was the most challenging issue for most respondents. Dependency on professional and paid caregivers was frustrating for many, but dependency on unpaid caregivers (family and friends) was identified as the most difficult task. Fear of being a burden to caregivers was predominant.

Coping strategies were diverse, but the following strategies were often described:

•	recognizing that help was necessary
•	thinking about receiving help in the context of one’s lifelong relationships “I had to do a lot of thinking to reassure myself that that’s what families are for – and that I had done all I could for them in the past.”
•	accepting that caregivers really wanted to help and viewed caregiving as a positive experience in their lives “My daughter finally convinced me she was grateful she could help.”
•	beginning to think about their care needs as a task in which they could play an important role “I finally stopped worrying about needing care and asked myself what can I do for me and my caregivers.”

For many, this was a process of moving from perceived independence to dependence to interdependence (between caregiver and care receiver). Closely related to the resolution of feelings regarding accepting assistance was the concurrent theme of finding some means of achieving reciprocity.

Many survivors were motivated by this desire for reciprocity and/or being an active partner in their own care process, to engaging in a variety of coping strategies. Stroke survivors participated in a variety of self-care strategies such as exercise, medical compliance, learning more about their condition, diet-related strategies and learning new ways to perform tasks. They also reported psychosocial strategies such as trying to do all they possibly could, making as many decisions for themselves as possible, trying many techniques of self motivation, struggling to maintain a cheerful and hopeful attitude, use of humor, reliance on spiritual/religious approaches and numerous others.

Participation in interventions that improve communication skills, addressing ways to preserve and develop social support networks, increasing knowledge about self-care and health, and social services have also been helpful to stroke survivors. Support groups, educational groups and physical therapy groups have been a valuable source of assistance.

Overall, it is evident that the collective knowledge of stroke survivors and the copious creative strategies they have developed for living with stroke-related changes is a critical part of quality of life. There is great need for the expansion and development of social services that support and communicate this effort.