Table 4.
TBI-CareQOL Item Parameters for Feelings of Loss-Self, and Feelings of Loss-Person with TBI
| Item | Slope | Threshold 1 |
Threshold 2 |
Threshold 3 |
Threshold 4 |
|---|---|---|---|---|---|
| FEELINGS OF LOSS-SELF | |||||
| I have stopped living my life to care for the person with the injury. | 2.08 | −0.47 | 0.22 | 1.17 | 1.98 |
| It feels like I have lost my own identity because I am caring for someone else. | 3.11 | −0.43 | 0.11 | 0.98 | 1.53 |
| The responsibilities I have as a caregiver make me feel socially isolated. | 2.78 | −0.50 | 0.03 | 0.83 | 1.52 |
| I mourn for the life I used to have before the person I care for was injured. | 3.29 | −0.52 | 0.06 | 0.94 | 1.33 |
| I get depressed when I think that I am losing my future. | 3.29 | −0.11 | 0.52 | 1.28 | 1.71 |
| I feel miserable when I think about how my life has changed since the injury. | 3.37 | −0.25 | 0.42 | 1.28 | 1.70 |
| I feel sad because becoming a caregiver has changed what I expect for my future. | 3.52 | −0.40 | 0.15 | 0.98 | 1.41 |
| I feel devastated because my plans for the future have changed since the injury. | 3.51 | −0.03 | 0.55 | 1.24 | 1.73 |
| It is difficult to deal with personality changes in the person I care for. | 2.00 | −1.45 | −0.67 | 0.56 | 1.16 |
| My relationships with other people are affected because I have to care for the person with the injury. | 2.86 | −0.58 | 0.04 | 0.92 | 1.54 |
| I have a sense of loss due to the injury. | 2.25 | −0.90 | −0.28 | 0.67 | 1.31 |
| I have a sense of loss because I cannot travel as much as I would like because of my caregiver responsibilities. | 2.47 | −0.34 | 0.35 | 1.29 | 1.74 |
| I miss the way my life was before the injury. | 2.84 | −0.83 | −0.28 | 0.76 | 1.17 |
| I have difficulty accepting how much my life has changed. | 2.95 | −0.35 | 0.37 | 1.41 | 1.81 |
| I feel like I don’t have a fulfilling life due to my role as a caregiver. | 3.32 | −0.01 | 0.60 | 1.41 | 1.93 |
| I feel that I have no hope when I think about the future of the person I care for. | 2.39 | 0.09 | 0.79 | 1.69 | 2.30 |
| I feel like the life I once had is now over. | 3.50 | −0.17 | 0.35 | 0.91 | 1.37 |
| I feel like my life is gone because I am providing care for someone else. | 3.92 | 0.18 | 0.84 | 1.45 | 1.98 |
| It is difficult to accept my new way of life. | 3.23 | −0.13 | 0.59 | 1.57 | 2.08 |
| My life has changed for the worse due to my role as a caregiver. | 3.10 | 0.22 | 0.76 | 1.57 | 2.02 |
| It is difficult to accept that I may be caring for the person with the injury for the rest of my life. | 2.29 | −0.39 | 0.27 | 1.29 | 1.87 |
| I have had trouble getting my life going again since the person I care for was injured. | 2.55 | −0.35 | 0.29 | 1.26 | 1.85 |
| I neglect relationships because of my caregiving role. | 2.54 | −0.58 | 0.00 | 1.04 | 1.64 |
| I feel excluded from social activities because I have to care for the person with the injury. | 2.76 | −0.36 | 0.19 | 1.15 | 1.65 |
| I feel like I don’t have direction in my life. | 2.65 | −0.07 | 0.57 | 1.46 | 2.06 |
| I feel like I have lost relationships because of my caregiver responsibilities. | 2.76 | −0.23 | 0.30 | 1.23 | 1.62 |
| I feel like my life has been turned upside down because of the injury. | 2.59 | −0.72 | −0.23 | 0.73 | 1.33 |
| I feel lonely in my role as a caregiver. | 2.91 | −0.52 | −0.10 | 0.93 | 1.47 |
| I feel like my life was ruined by the injury. | 3.21 | 0.18 | 0.74 | 1.44 | 1.77 |
| I feel like my life has been destroyed by the injury. | 3.63 | 0.09 | 0.66 | 1.37 | 1.75 |
| FEELINGS OF LOSS-PERSON WITH TBI | |||||
| My heart breaks over the situation the person I care for is in. | 1.67 | −1.92 | −1.19 | 0.10 | 0.68 |
| I mourn the way the person I care for used to be before the injury. | 2.72 | −1.28 | −0.73 | 0.33 | 0.84 |
| I get sad when I think about the loss of abilities of the person with the injury. | 3.24 | −1.50 | −0.96 | 0.14 | 0.72 |
| I get sad because it is difficult to put myself in the position of the person I care for. | 1.53 | −0.84 | 0.11 | 1.32 | 2.12 |
| I get sad when I think about lost relationships of the person I care for. | 2.48 | −0.92 | −0.37 | 0.57 | 1.18 |
| I get depressed when I think about the situation the person I care for is in. | 2.57 | −0.77 | −0.18 | 0.74 | 1.29 |
| I feel devastated when I think that the person I care for is losing his/her future. | 3.03 | −0.58 | −0.04 | 0.73 | 1.17 |
| I feel sad because the person I care for has experienced changes in memory that are a result of the injury. | 2.27 | −1.76 | −1.24 | −0.09 | 0.61 |
| I feel sad because the person I care for may never fully recover. | 3.05 | −1.13 | −0.61 | 0.22 | 0.65 |
| I feel angry because the person I care for may never fully recover. | 2.07 | −0.45 | 0.05 | 0.98 | 1.40 |
| I feel as if the person I care for does not have a fulfilling life since the injury. | 2.47 | −0.72 | −0.25 | 0.74 | 1.34 |
| It is difficult trying to accept that the person I care for may never fully recover. | 2.40 | −0.78 | −0.18 | 0.86 | 1.36 |
| It is difficult to accept that the person I care for is no longer the same person as before. | 2.75 | −0.94 | −0.33 | 0.75 | 1.25 |
| It is painful to remember who the person I care for used to be before the injury. | 2.38 | −0.77 | −0.31 | 0.75 | 1.16 |
| I mourn the fact that the person I care for no longer interacts with other family members in the same way as before the injury. | 2.12 | −0.78 | −0.32 | 0.69 | 1.18 |
| I feel like I am grieving for who the person I care for used to be. | 3.08 | −0.64 | −0.18 | 0.72 | 1.16 |
| I grieve about the loss of the future of the person I care for. | 3.70 | −0.71 | −0.26 | 0.67 | 0.99 |
| I feel devastated about the changes in personality of the person I care for since their injury. | 2.77 | −0.64 | −0.03 | 0.83 | 1.28 |
| I feel like the life of the person I care for has been destroyed by the injury. | 2.83 | −0.63 | −0.18 | 0.59 | 1.14 |
Note. Items that are indicated in bold were selected for inclusion on the 6-item, Feelings of Loss-Self, and Feelings of Loss-Person with the TBI short forms