| Literature DB >> 33062879 |
Jo-Ana D Chase1, David Russell2,3, Meridith Rice1, Carmen Abbott4, Kathryn H Bowles5, David R Mehr6.
Abstract
BACKGROUND: Post-acute home health-care (HHC) services provide a unique opportunity to train and support family caregivers of older adults returning home after a hospitalization. To enhance family-focused training and support strategies, we must first understand caregivers' experiences.Entities:
Keywords: home health; hospitalization; older adults; physical functioning; post-acute; qualitative research
Year: 2019 PMID: 33062879 PMCID: PMC7534114 DOI: 10.1177/2374373519869156
Source DB: PubMed Journal: J Patient Exp ISSN: 2374-3735
Sample Caregiver Questions.
| Sample Questions and Probes |
|
Could you describe any teaching, training, or support to help X recover his/her mobility or activity levels provided by home care? Probe: How did the home care provider deliver the teaching, training, support? Probe: Was this teaching, training, or support helpful? If so, how was it helpful? If not, why was it not helpful? Probe: How could the teaching, training, or support have been more helpful? |
| I would like you to think about the first time the home care provider visited X. Can you describe to me what happened during the first home care visit after X returned home from the hospital? How soon after you got home was the first home care visit? Was the home care provider a nurse? Physical therapist? Other? Was the home care provider knowledgeable? |
| Can you describe any discussions about the patient’s goals of care (eg, functional recovery)? |
| Can you describe other topics covered by the home care provider? Did you ask any questions? And if so, what questions did you ask? If not, why didn’t you ask any questions? |
Caregiver Characteristics.a
| Variable | n or Mean (SD) |
|---|---|
| Caregiver characteristics | |
| Mean age (SD) | 58 (13) |
| Female | 14 |
| Married | 7 |
| Race/ethnicity | |
| White | 7 |
| Black | 8 |
| Hispanic/Latino ethnicity | 5 |
| Education | |
| At least some college | 14 |
| High school or GED | 6 |
| Employment status | |
| Retired | 8 |
| Employed | 10 |
| Unemployed | 2 |
| Self-reported health | |
| Excellent to very good | 9 |
| Good to fair | 11 |
| Caregiving characteristics | |
| Mean years providing care (SD) | 14 (13) |
| Care recipient | |
| Parent | 13 |
| Spouse | 1 |
| Sibling | 3 |
| Grandparent | 1 |
| Friend | 2 |
| Lives with care recipient | 10 |
Abbreviations: SD, standard deviation; GED, general education development.
a N = 20.
Summary of Categories and Sub-Categories With Exemplar Quotes.
| Category 1a: Facilitators to Learning How to Manage PF Needs |
| “ “…sickness been around in the family for a long time. So guess that’s where [my experience] all come from, right.?” (Steven, 60, husband]. “When I was going through CNA training, watching the visiting nurse services have done for both my mother and grandmother, that’s kind of help me prepare for any time, you know, she has to go in the hospital and she does come home” (Ellen, 29, grand-daughter). “If I have questions, I’ll ask them when they’re there. Should my mom be doing this or shouldn’t she be doing that? I’ll question them, like when the therapist is here with my mom. How long is she supposed to do therapy? How long is she supposed to do it for? How long is she supposed to stand for? Things like that. Yeah, I did ask questions just to make sure because she’ll know I know, so just because they’re not here doesn’t mean that she [doesn’t need to do it]” (Jane, 46, daughter). “I just followed suit. They didn’t give me any formal training or anything. I just watched what they did and then just continued doing it” (Mike, 53, Son). “The [physical] therapist left a 8 by 10 paper, instructions on how to exercise her when she not here.” [Steven, 60, husband] |
| Category 1b: Barriers to Learning How to Manage PF Needs |
| “ “Well, I read, you know, by my reading, but [nobody] comes here and train me how to do this, nobody. I learn on my own” (Kate, 62, daughter). “I would say the most important things I need to know is, you know, is she progressing in her treatment. Is, you know, are her, are the long-term health goals being met, and whether or not there’s any, you know, changes that the nurse feels may be necessary to ensure that, you know, she, her, her quality of life stays the same or improves” (Roger, 49, Son). “I think that would have helped if they had asked me more…there were some things that I didn’t think were a big deal” (Cindy, 54, daughter). “It’s kind of, you know, difficult. There’s a lot of folks involved in her care, I guess, and because they’re all, you know, not necessarily communicating with one another, you tend to have to repeat yourself a lot. (My mom) gets frustrated that way.” [Roger, 49, Son] |
| Category 1b: Barriers to Learning How to Manage PF Needs |
“If you’re in the hospital, when you get home, they don’t usually come the same day…they usually don’t come until the next day” (Helen, 68, daughter). “I think it is really important that there’s extra information given, like a couple weeks is not enough. I think they should be more informative if they only have that couple of weeks, they should have more information to give you, and that’s what they did on the phone program. They were giving me more information, asking me different questions than they did in the house. So I think that would have helped more, if they had asked me more so there were some things that I didn’t think were a big deal. They did, and they asked me more questions about afterwards, so that helped a lot” (Cindy, 54, daughter). “So, if something could be improved, I would think, if possible, to have that visiting nurse come the day you come home. That would be my biggest request to everybody, that they should improve one, so that when you get home, that person comes and checks [up] and sees you” (Helen, 68, daughter). |
| Category 2: Interactions with HHC Providers When Receiving Training and Support |
| “ “I think the perfect [home health aide] will be a person who’s calm and caring and showing that she’s there mainly to help her, assist her and, you know, because, they are alive and they do have a mind” (Tara, 71, daughter). “Oh, well, first and foremost, you know, conversation…I told the girl, ‘Can you go in and talk to her?’ Do you know how heartbroken it is to walk in and just see your mother just sitting there staring down the foyer, doing nothing. That’s what I told the girl…Go in and sit with her…some kind of conversation.’ I, my mother didn’t seem to have luck with aides and nurses, she really didn’t. Like some, I know some people that have them and they’re interacting with them. I don’t know they just, they didn’t interact” (Donna, 54, daughter). “I did ask [the nurse] if I was using the machine correctly and if I should be doing anything else because I wasn’t, you know, told anything from the hospital. So was there anything I should do? There was not even a plan, no paperwork given to me that I found out that you’re supposed to get instructions. I didn’t know that. So she said she would check with the doctor and that was it really. She didn’t have any information on the case” (Iris, 58, sister). “It’s just that I feel that [HHAs] need some kind of, you know, classes, they should have more of an open mind and a little bit more compassion…know how to handle people, especially, seniors that live alone and, you know, disabilities” (Tara, 71, daughter). |
Abbreviations: PF, physical functioning; HHC, home health care.