What is your experience – Grief and loss or Hope and Setting new goals?

After stroke, stroke survivors and their families are often told to be realistic about recovery.  Health professionals try to focus on keeping things realistic—a balance between giving hope and avoiding false hope.  Does being realistic mean you shouldn’t have hope or that you shouldn’t set new goals?

Hope
When people are faced with a health crisis, they often struggle between hopefulness and hopelessness (Tutton el a., 2011). After spinal cord injuries, people cycled between ‘being in despair’ or ‘being in hope’ (Lohne, 2008). However, even at the end of life and in palliative care, Dr. Wendy Duggleby found that people have hope. They focused on hope for that day (Duggleby et al. 2010).

Hope is a positive force that enhances motivation, helps people to set and achieve new goals and enhances their ability to adapt to change.  Sometimes, hope helps people reflect back on the lives they lived and their hopes for their family (Duggleby et al. 2010).

Desire to Get Back to Normal or Grief and Loss
After stroke, many authors discovered that hope is expressed as a strong desire to recover and get back to normal (Bluvol, 2004, Tutton et al., 2011).   Hope to get back to normal life is quite typical.  After illness or surgery, older adults had four hopes for recovery: cure and restoration, adjusting to discontinuity and establishing markers of continuity, getting back and keeping going, and managing uncertainty (Godfrey & Townsend, 2008).

Many researchers and professionals use grief and loss theory to describe what happens to anyone with a disabling condition or serious illness. In this model, first there is a crisis--shock, anxiety, and confusion.  Second, after the crisis passes and treatment starts, people expect to recover completely; they deny disability is permanent. Third, they start to recognize that disability will not change; they become angry, depressed, or frustrated.  They have to grieve for their loss of “taken for granted identity” and body. Fourth, they begin to accept their new reality as a disabled person.

Hope and Setting New Goals
In 2004, British researchers,   Helen and Andy Alaszewski suggested that the grief and loss model may be a professional conception, not how stroke survivors regard their lives.  They indicated that in their research, stroke survivors were much more proactive. None of their survivors mentioned grief and loss.   While they did acknowledge stroke was a shock, survivors tried to make sense of what has happened and normalize their lives by setting goals (Alaszewski, Alaszewski, & Potter, 2004; Alaszewski, Alaszewski, & Potter, 2006).  But professionals all talked about having to go through a period of grief and loss. To illustrate the differences between professionals and survivors, they quoted a former academic. He charged that grief and loss models are easy for professionals to remember, but not related to stroke survivors actual day-to–day stroke management experience:

I think that a therapist said something about the bereavement model to me but I can’t remember whether it was while in hospital following my stroke or when I eventually returned to work for a short while. I think I remember that it seemed to serve a useful purpose for the therapist. It was a convenient model that, because it is easy to memorise and relate to, provided a useful conceptual framework. It is an easy thing to hang ideas and concepts on and for that reason the model has probably caught on in therapists’ training. I can’t think of anything from my own experiences that fits with the model apart from a dream which I had about being in the local cathedral and I dreamt that I no longer suffered my stroke induced physical disabilities.(Godfrey & Townsend, 2008)

So what about you?

• Did you have hope after your stroke?
• Did you set goals and get on with life?
• Did you lose your identity after stroke? or
• Are you the same person, just need to adapt what you can do?

Links to Other Information or Articles

• The Hope Foundation at the University of Alberta.
• The bereavement model, stroke and rehabilitation: Alaszewski, Alaszewski, & Potter, (2004).
• Hope, health work and quality of life in families of stroke survivors.   Bluvol, A. & Ford-Gilboe, (2004). 
• Health and recovery in older adults, Mary Godfrey, Jean Townsend  (2008) .
• Staff and patient views of the concept of hope on a stroke unit,  Tutton E., Seers K., Langstaff D. & Westwood M. (2011).
• Virtual reality stroke rehabilitation – hype or hope?,  Kate Laver, Stacey George, Julie Ratcliffe and Maria Crotty  (2011) .        

References

• Alaszewski, A., Alaszewski, H., & Potter, J. (2004). The bereavement model, stroke and rehabilitation: A critical analysis of the use of a psychological model in professional practice. Disability and Rehabilitation, 26(18), 1067-1078.
• Alaszewski, A., Alaszewski, H., & Potter, J. (2006). Risk, uncertainty and life threatening trauma: Analysing stroke survivor's accounts of life after stroke. Forum Qualitative Sozialforschung, 7(1)
• Bluvol, A. & Ford-Gilboe, (2004). Hope, health work and quality of life in families of stroke survivors. Journal of Advanced Nursing 48(4), 322–332
• Duggleby W., Holtslander L., Kylma J., Duncan V., Hammond C. & Williams A. (2010) Metasynthesis of the hope experiences of family caregivers of persons with chronic illness. Qualitative Health Research 20(2), 148–158.
• Lohne V. (2008) The battle between hoping and suffering. A conceptual model of hope within the context of spinal cord injury. Advances in Nursing Science 31(3), 237–248.
• Lohne V. & Severinsson E. (2004a) Hope and despair: the awakening of hope following acute spinal cord injury – an interpretative study. International Journal of Nursing Studies 41(8), 881–890.
• Lohne V. & Severinsson E. (2004b) Hope during the first months after acute spinal cord injury. Journal of Advanced Nursing 47(3), 279–286.
• Godfrey, M., & Townsend, J. (2008). Older people in transition from illness to health: Trajectories of recovery. Qualitative Health Research, 18(7), 939-951.
• Tutton, E. , Seers, K., Langstaff, D., Westwood, M.  (2011). Staff and patient views of the concept of hope on a stroke unit: A qualitative study. Journal of Advanced Nursing November, DOI: 10.1111/j.1365-2648.2011.05899.x