| Literature DB >> 32734179 |
Deidra C Crews1,2,3,4, Alice M Delaney5, Janiece L Walker Taylor2, Thomas K M Cudjoe6, Manka Nkimbeng2, Laken Roberts2, Jessica Savage2, Allyson Evelyn-Gustave2, Jill Roth2, Dingfen Han1, LaPricia Lewis Boyér7, Roland J Thorpe4,8, David L Roth4,6, Laura N Gitlin2,9, Sarah L Szanton2,4,8.
Abstract
RATIONALE &Entities:
Keywords: Disability; activities of daily living; dialysis; home environment; older adults; qualitative study; social engagement; socioeconomic status
Year: 2019 PMID: 32734179 PMCID: PMC7380338 DOI: 10.1016/j.xkme.2018.12.001
Source DB: PubMed Journal: Kidney Med ISSN: 2590-0595
Selected Participant Quotations for Key Themes Identified in Focus Groups of Older Adults on Hemodialysis and With Functional Limitations
| Theme | Quotations | Group |
|---|---|---|
| Desire to Live Independently | ||
| Avoid nursing home | “It took every ounce of mental energy that I had to get out of that nursing home… I just don’t want to go back. And I can’t stand it, I couldn’t stand it. And I thought it was going to kill me. Where you have no independence. It’s, you’re at their beck and call for everything. Even when you don’t want to eat, for an example, you’re stuck.” M, FG1 | 1 |
| Fatigue | ||
| Dialysis days | “My challenge is getting up in the morning, trying to prepare for that day, when I have dialysis. And that means that my time is limited. And sometimes I feel like I want to fix breakfast and sometimes I don’t. I might look around and see that I have to clean the kitchen and I don’t do it. The bedroom need to be made up; I don’t have the energy to do it and I don’t want to do it. I just want to hurry up and get out so I have to go to dialysis, so I can get there on time, so I can get back. Maybe finish up what I left. So after dialysis I am, I feel like I’m not tired until I actually leave. That’s when it starts. I feel sometimes I get a little shaky and a little bit off balance, but then I just rest. That’s my main thing, I have to rest. Once I’m rested up, I’m okay, and then I have enough energy to clean my kitchen and that’s it. And then I’m through for the night.” F, FG1 | 1 |
| Lack of Social Support | ||
| Family | “Family members, I’ll start there. Naturally, they really don’t understand the disease. As you talk about it with them, they’re busy trying to tell you what they done heard from other people. That gets on your nerves. Try and explain to them that that’s not the way it is with me. And they, then after they get their little opinion in and their point in, they become a little disinterested. They don’t really care. They kind of like, they distance themselves, and they do it, they try to do it in different ways. And I can tell, because you don’t hear from them as often as you did at first.” F, FG1 | 1 |
| Social Engagement | ||
| Going out | “I haven’t been nowhere all winter, all spring, and maybe I can get out this summer. There’s just so [much] happening going on. It just makes me just stay home.” M, FG2 | 2 |
| Isolation from friends | “I don’t have the friends I used to have. Well, once I got sick, and I couldn’t get out there like I used to, and then when I could get myself together to get out there, I really didn’t want no bother. Because I was sort of like embarrassed, believe it or not. I just didn’t want nobody to know what was going on.” M, FG2 | 1, 2 |
| Coping | ||
| Maintaining joy | “Don’t let nobody take your joy. Now, I’m the type of person that have joy all the time, because I asked God for peace, and God gave me peace, no matter what. And I just thank and praise God for everything.” F, FG2 | 2 |
| Employment Impact | ||
| Inability to work | “See now that’s the one thing that I missed. Not working and not being around people, because I did, I used to work at… And I was used to being around people and doing and things like that. But I could not keep my job because of the timeframe. You couldn’t get there on time.” F, FG2 | 2 |
| Acceptable/Unacceptable Interventions | ||
| Handyman services | “I’m in the senior building and everything’s on one floor and the bathroom is nice and wide. I don’t have a bathtub; it’s a shower though. And that I feel could be improved. You know, I really don’t like the way the shower is… I would put a bar in there, so I can grip myself when I come in. And the kind of shower I have is the kind you have, it’s like a nozzle and you have to operate with your hand, rather than have the sprout [sic] that I like, that I could adjust it down there like that. If I had that, it would be better.” F, FG2 | 2 |
| Goal setting | “I was saying I would like to walk again on my own. Without help… I like to do things on my own. And then when I do them, sometimes it works out, sometimes it don’t. But mostly it works out. I got sick, and I got like, as I came out the hospital, I got weak and couldn’t walk. That’s it.” F, FG2 | 2 |
Abbreviations: F, female; FG1(2), focus group 1(2); M, male.
Baseline Characteristics of SOCIABLE Participants, by Treatment Group
| Characteristic | Control (delayed) (N = 6) | Intervention (immediate) (N = 6) |
|---|---|---|
| Age, | 68.6 (7.8) | 69.5 (4.6) |
| African American race | 6 (100%) | 6 (100%) |
| Male sex | 3 (50%) | 4 (66.7%) |
| ≥High school education | 3 (50%) | 4 (66.7%) |
| ADL disability scale score | 3 (1-11) | 2.5 (0-12) |
| IADL disability scale score | 6 (2-10) | 5.5 (3-10) |
Note: n = 12. Values expressed as mean (standard deviation), number (percent), or median (range).
Abbreviations: ADL, activities of daily living; IADL, instrumental activities of daily living; SOCIABLE, Seniors Optimizing Community Integration to Advance Better Living with ESRD.
Of 5 participants.
Outcome Comparisons for SOCIABLE Intervention and Control Groups
| Intervention (immediate) Group | Control (delayed) Group | |||||
|---|---|---|---|---|---|---|
| Baseline Score (n = 6) | Score at 5 mo Postintervention (n = 6) | Difference | Baseline Score (n = 3) | Score at 5 mo Postintervention (n = 3) | Difference | |
| ADL disability score (higher = worse) | 4.8 ± 5.3 | 2.0 ± 3.03 | −2.8 ± 3.7 | 2.0 ± 1.7 | 0.7 ± 1.2 | −1.3 ± 0.6 |
| IADL disability score (higher = worse) | 6.3 ± 3.1 | 3.8 ± 3.06 | −2.5 ± 1.9 | 6.0 ± 7.2 | 3.3 ± 3.2 | −2.7 ± 4.04 |
| Social Support and Satisfaction score (higher = greater) | 43.8 ± 10.5 | 46.5 ± 10.3 | 2.7 ± 7.2 | 35.3 ±17.2 | 44.3 ± 19.4 | 9.0 ± 7.2 |
| Social Network score (higher = larger network) | 19.8 ± 10.5 | 24.7 ± 9.5 | 4.8 ± 4.6 | 15.7 ± 5.9 | 20.0 ± 9.0 | 4.3 ± 5.9 |
Note: Data presented as mean ± standard deviation.
Abbreviations: ADL, activities of daily living; IADL, instrumental activities of daily living; SOCIABLE, Seniors Optimizing Community Integration to Advance Better Living with ESRD.
n = 3 at baseline and postintervention for the control (delayed) group due to 3 deaths occurring before the group received the intervention.
Raw Scores for SOCIABLE Intervention and Control Groups
| Group/Participant No. | ADL | IADL | Social Network | Social Support/Satisfaction | ||||
|---|---|---|---|---|---|---|---|---|
| Baseline | Follow-up | Baseline | Follow-up | Baseline | Follow-up | Baseline | Follow-up | |
| Intervention (immediate) | ||||||||
| 1 | 1 | 0 | 3 | 0 | 26 | 24 | 50 | 55 |
| 3 | 11 | 8 | 10 | 9 | 0 | 7 | 29 | 27 |
| 6 | 12 | 2 | 10 | 4 | 24 | 32 | 53 | 55 |
| 8 | 3 | 1 | 7 | 5 | 27 | 34 | 49 | 46 |
| 10 | 2 | 1 | 4 | 2 | 16 | 25 | 50 | 48 |
| 12 | 0 | 0 | 4 | 3 | 26 | 26 | 32 | 48 |
| Control (delayed) | ||||||||
| 2 | 1 | 0 | 14 | 7 | 18 | 29 | 54 | 61 |
| 4 | 4 | 2 | 4 | 2 | 9 | 11 | 20 | 23 |
| 7 | 1 | 0 | 0 | 1 | 20 | 20 | 32 | 49 |
Abbreviations: ADL, activities of daily living; IADL, instrumental activities of daily living; SOCIABLE, Seniors Optimizing Community Integration to Advance Better Living with ESRD.