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Thread: Quality of life of primary caregivers of spinal cord injury survivors living in the community

  1. #1

    Quality of life of primary caregivers of spinal cord injury survivors living in the community

    • Unalan H, Gencosmanoglu B, Akgun K, Karamehmetoglu S, Tuna H, Ones K, Rahimpenah A, Uzun E and Tuzun F (2001). Quality of life of primary caregivers of spinal cord injury survivors living in the community: controlled study with short form-36 questionnaire. Spinal Cord. 39 (6): 318-22. Summary: OBJECTIVE: To compare the quality of life scores of primary caregivers of spinal cord injury survivors living in the community with healthy age matched-population based controls and to determine the relationship between some severity parameters related with spinal cord injury and the quality of life scores of primary caregivers. SETTING: University hospital, rehabilitation centre. METHODS: Fifty primary caregivers of spinal cord injured patients living in the community and 40 healthy age- matched controls completed SF-36 (short form-36) questionnaire forms. Questionnaires were administered by interviewers who were physiatrists and the authors of the present study. All the patients were rehabilitated by the authors and data about the duration of injury, lesion levels, ASIA scores, degree of spasticity, presence of bladder and bowel incontinence and pressure sores were gathered from the hospital recordings and/or by physical examinations during control visits when the primary caregivers were administered the questionnaires. RESULTS: Quality of life scores measured by SF-36 were significantly low in the primary caregivers group compared to age- matched healthy population based controls. No significant relation was demonstrated between the quality of life scores of primary caregivers and parameters such as the duration of injury, lesion levels, ASIA scores, degree of spasticity, bladder and/or bowel incontinence and pressure sores respectively. CONCLUSION: According to the results of the present study, being a primary caregiver of a spinal cord injured victim significantly interferes with quality of life; some severity parameters related to the injury however do not seem to have an additional impact on the primary caregiver's life quality. <http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?db=m&form=6&dopt=r&uid=11438853> Department of Physical Medicine and Rehabilitation, Cerrahpasa Faculty of Medicine, Istanbul University, Istanbul, Turkey.

  2. #2
    Being a primary caregiver has deleterious effects on the quality of life of the caregiver in Turkey.

  3. #3

    re: quality of life

    DUH! I don't think any caregiver would disagree with this!

  4. #4
    Senior Member BJ's Avatar
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    Quality of Life

    OK, am I just outside the norm or what? I think my quality of life is great. Granted I would be more comfortable finding a new full time job but that will come. Just got laid off. But as far as the rest of my life I would rate it excellent.

    I have a husband who loves me, a roof over my head, some savings in the bank, good health for both of us, ability to do what we want pretty much when we want - what part is suppose to be so bad?

  5. #5
    Senior Member martha's Avatar
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    Quality of Life

    Tag, I think your outlook is fantastic. I hope I get there. Perhaps with time and experience it will happen.
    martha

    [This message was edited by martha on September 05, 2001 at 12:04 AM.]

  6. #6
    Senior Member BJ's Avatar
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    Quality of Life

    Hope so - Was talking to hubby about this last night. He mentioned the fact that over 28 years he has adapted the philosophy of - "I can fight the SCI and focus on the negative or I can focus on the fact I'm alive and just live with what I have to day". If a cure comes along tomorrow great but it's not here today so just move on.

    Maybe that's why I have the feelings I do. He certainly makes it easier to have a good attitude since he refuses to focus on what he can't change.

    After a period of high stress and about 6 bad things happening all at once I talked to a "shrink". The most important thing I learned from those sessions is: "Don't waste time on worrying about things you have no control over and things you just can't change." So I refuse to focus on anything that fits those categories. Everything gets the question asked of it - Can I change it, fix it or have control over it - if the answer is no then I just move on. Sure a few tears might get shed but I refuse to spend days or weeks readdressing any of it

  7. #7

    re - quality of life

    How we define 'quality of life' is a large measure of how we feel; if we have defined quality of life as being independent, financially secure, etc., obviously those things are interrupted when a family member has a serious, longterm disability.

    Everyone's 'quality of life' issues are going to be different, just as the issues of independence are individual to each family member with an SCI injury. Again, I don't feel we can compare our own situation with anyone elses'- we're all unique in our family structure, cultural, financial, and spiritual values. Each family has to learn to deal with quality of life matters as best befits their own unique situation.

    It makes me so happy to hear of spouses, sons and daughters, and moms and dads, who have found a rewarding quality of life after injury; it also makes me a little jealous - because we have issues to deal with that perhaps others don't. I always have to remind myself not to compare - just as I learned in rehab not to compare my son's injury or progress in recovery and function with anyone else's.

    I think we all find our own way through the maze, through the nightmare, and out onto the other side, where we can begin to see a little dawn after a long, long, journey into night.

    I can remember when I first began noticing the beauty in a fresh flower, or a warm spring day, or spotting a newly birthed fawn at the edge of the yard - it was about a year and a half after my son's injury; that was my turning point. To be able to experience the little joys at that point opened the way to feeling greater joys and satisfactions, and accomplishments that were separate from my son's injury, and that made me feel more like a whole person again.

    Sure, we have 'quality of life' issues; loss of independence among them - making room in our home for our adult son, and learning to treat him as an adult member of the household, and making him feel he IS an adult member, and not a kid. But finding room for a little joy - even in the 'little things' has made such a difference!

    Our paths down this journey that none of us asked for are all different; some are winding, meandering trails through dense forest; some lead us through marshy quadmires, and some have paths that are superhighways to our goals. Whatever path we find ourselves on is the one we must follow.

  8. #8
    Originally posted by Tag:

    OK, am I just outside the norm or what? I think my quality of life is great. Granted I would be more comfortable finding a new full time job but that will come. Just got laid off. But as far as the rest of my life I would rate it excellent.

    I have a husband who loves me, a roof over my head, some savings in the bank, good health for both of us, ability to do what we want pretty much when we want - what part is suppose to be so bad?
    To the best of my knowledge, QoL is subjective. The results and conclusions of our study can not be generated. Many factors such as cultural, environmental and/or social, among others, may well play their roles in the results of such researches. If you ask me, as long as you feel great, YOU ARE GREAT. This is the real quality of life!


    Halil UNALAN MD from Turkey



    Halil UNALAN

  9. #9

    Agree w/study, Dr. Wise

    I am caregiver to brother and my quality of life is just as study says. My brother's injury has definitely changed my quality of life. Some days I don't think I have a life at all. And I'm not begrudging anything here, I love my brother with all my heart. But his injury has changed my life in a not so good way and I often resent it. My brother had no wife, a daughter that didn't care, and parents that were too old when he became a SCI at age 45. I was his oldest sister and took on the responsibility, but it has wore me down over 2 1/2 years. I'm so tired sometimes and very low on patience these days. My own family and husband suffer a loss because of it, too.

    I thought about what the other posts here said and agree that the outlook of the injured person has a lot to do with how it will affect the lives of the caregivers too. AND agree that letting go of things you cannot change or do anything about will ensure less stress on the caregiver. I will definitely use that train of thinking in days to come.

    Just being honest, I guess everybody's different.

  10. #10
    Senior Member
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    BJ:

    Maybe it's the "water" in Denver... but I agree with you. I consider myself fortunate that my husband is still in my life. It may be because of his level of injury (T11 complete) and that it's been about 2 years since injury and that we have both adapted to his new life.

    Sieg

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