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Wellness support for persons with SCI and their caregivers

Funder: Craig H Neilsen Foundation

Funding period
USD 57 K
Funding amount
Wellness support for persons with Spinal Cord Injury (SCI) and their caregivers. The Rochester Spinal Association has developed a network of persons touched by SCI. This unique perspective has created a community that connects people with needs to those who can support those needs. The Rochester Spinal Association will be supporting a robust community project that hopes to individualize support to improve the wellness of both the person with a spinal cord injury and those caregivers who help to maximize their independence. Our first area of focus would provide a person with SCI financial aid to access strength, conditioning and wellness program. We currently have multiple members that use a Nielsen grant supported collaborative effort between the University of Rochester Medical Center (URMC) and the local YMCAs. Our application would explore expanding that effort by adding 1:1 trainers, accessible equipment and perhaps additional membership support.

Our second area of focus would be to improve the quality of life for those who support our SCI population. Over the last several years, our monthly social support group has identified a need in the SCI community for caregiver wellness. We have heard many testimonials from our attendees that caregiver stress levels often reach the point of physical and emotional burnout. Numerous publications have documented the burden of caregivers and the associated symptoms of these increased stress levels on their health and wellbeing. We propose a variety of interventions to provide relief for caregivers. These could would include the ability to apply for funds that can be used to hire part-time personal assistants for respite. Some of the solutions identified in the literature to address these symptoms include: hiring additional help, creating care giver specific support groups, counseling, “care-swapping programs” and cultivation of friendships.

RSA will coordinate the use of these funds to allow caregivers to gather independently once per month quarter. This gathering would provide attendees the opportunity to share feelings, experiences, ideas and foster much needed mutual support. We would also provide planned programming that included mindfulness training, counselor support, nutrition education and therapeutic massage intervention and instruction. Our membership has also suggested education for care givers on topics related to managing personal assistants, skin assessment and ways to handle an “eventual fall to the floor or ground.”

By enhancing this burgeoning community, we plan to continue the momentum that has been gathering in the Rochester Community. Each new initiative brings in more financial support, more awareness and most importantly, more people we can touch and connect. Our ultimate goal, with the support of the Nielsen foundation is to create a self-sustaining network of programs that add value to the community and to the lives of persons touched by spinal cord (CHN: COandI chn:wdg)
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    1117 Public Health and Health Services

  • RCDC

    Injury (total) Accidents/Adverse Effects

  • RCDC

    Injury - Trauma - (Head and Spine)

  • RCDC


  • RCDC

    Mind and Body

  • RCDC

    Spinal Cord Injury

  • RCDC

    Behavioral and Social Science

  • RCDC


  • RCDC


  • Health Research Areas