Health Interventions for Survivors and Primary Support Persons of Spinal Cord Injury

The specific aims of this project are to:

1. Assess the impact of a dual target (caregiver and care recipient) intervention compared
to a traditional caregiver-only intervention strategy.

2. Assess causal linkages between the treatment components (e.g. knowledge, social
support) of a multi-component intervention and specific treatment outcomes (e.g.
caregiver depression, quality of life).

3. Explore cultural and racial differences in the evaluation of and effectiveness of the
different treatment approaches.

Overall, the issues affecting management of SCI/D in later life are complex and hold
critical implications for the health of the long-term survivor as well as for those who
provide care in the home environment. Large numbers of individuals are living with the
effects of SCI/D for decades post-injury. In addition to the health-related complications
that typically accompany older age, these individuals are especially vulnerable to
co-occurring medical conditions that require high degrees of support and maintenance.
Consequently, older caregivers face multiple and often extreme challenges in providing
support to the SCI/D survivor at a time in their lives when their own abilities may be
compromised due to age-related changes in health and functioning.

The multi-faceted burden faced by caregivers is associated with high levels of depression
and anxiety as well as the onset of deleterious physical symptoms. The cumulative effects of
such multiple stressors over time all too frequently leave the caregiver unable to continue
providing the level of support necessary to maintain their partner's health in the home
environment. In order to circumvent the additional distress certain to accompany such a
family separation, Elliott et al. (2001, p. 230) recently concluded that "there is a
pressing need for interventions that help family [SCI] caregivers address the routines and
tasks essential to maintaining family functioning."

Inclusion Criteria (Survivors):

- have adult-onset disability resulting from spinal cord injury, trauma, or disease,

- be survivors with complete or incomplete injury as defined by the American Spinal
Injury Association (ASIA) impairment scale

- require and use some type of assistance for getting around (e.g., wheelchair, cane,
etc.) be 30 years old or older be living at home for a minimum of 1 year post-injury
(to avoid the acute trauma phase) speak English.

Inclusion Criteria (Caregivers):

- Is a family member/partner (e.g. spouse, child, or fictive kin)

- is 18 years of age or older

- is or is not living with the care recipient

- speaks English

- has a telephone at home

- plans to live in the area for at least 6 months.

- self-identifies as white, African American or Hispanic.

Exclusion Criteria:

- has a terminal illness with life expectancy of less than 6 months

- is in active treatment for cancer (except for tamoxifen and lupron)

- is blind or deaf

- if the survivor is cognitively impaired due to brain injury or dementia and/or has no
use of their hands and severe limitations in speech production