| Literature DB >> 32734214 |
Rachael C Walker1, David Tipene-Leach1, Aria Graham2, Suetonia C Palmer3,4.
Abstract
RATIONALE &Entities:
Keywords: End-stage kidney disease; decision-making; home hemodialysis; patient preference; semi-structured interviews
Year: 2019 PMID: 32734214 PMCID: PMC7380439 DOI: 10.1016/j.xkme.2019.07.010
Source DB: PubMed Journal: Kidney Med ISSN: 2590-0595
Participant Characteristics
| Characteristics | No. (%) |
|---|---|
| Age category | |
| 31-40 y | 7 (28%) |
| 41-50 y | 9 (36%) |
| 51-60 y | 6 (24%) |
| 61-65 y | 3 (12%) |
| Marital status | |
| Married/de facto | 11 (44%) |
| Partner (not living together) | 3 (12%) |
| Divorced/separated | 1 (4%) |
| Single | 8 (32%) |
| Widowed | 2 (8%) |
| Highest level education | |
| Some secondary | 2 (8%) |
| Completed secondary | 8 (32%) |
| Trade certificate or equivalent | 6 (24%) |
| Completed certificate or diploma | 2 (8%) |
| Completed degree | 5 (20%) |
| Postgraduate education | 2 (8%) |
| Employment status | |
| Fulltime | 6 (24%) |
| Part-time | 8 (32%) |
| Beneficiary | 10 (40%) |
| Retired | 1 (4%) |
| Ethnicity | |
| Māori | 10 (40%) |
| Tongan | 3 (12%) |
| Samoan | 7 (28%) |
| Cook Island Maori | 4 (16%) |
| Fijian Indian | 1 (4%) |
| Time to closest dialysis unit (traveled 1 way) | |
| 0-10 km | 16 (64%) |
| 11-50 km | 4 (16%) |
| 51-100 km | 2 (8%) |
| >101 km | 3 (12%) |
| Cause of kidney disease (self-identified) | |
| Diabetes | 10 (40%) |
| Hypertension | 1 (4%) |
| IgA nephropathy | 3 (12%) |
| Nephrotoxic medication | 1 (4%) |
| Vasculitis | 1 (4%) |
| PKD | 1 (4%) |
| Unsure | 8 (32%) |
| Length of time on dialysis | |
| 0-2 y | 7 (28%) |
| 3-4 y | 5 (20%) |
| 5-6 y | 5 (20%) |
| 7-8 y | 5 (20%) |
| 9-10 y | 0 (0%) |
| <10 y | 3 (12%) |
| Hours on dialysis | |
| 15 h/wk | 4 (16%) |
| 18 h/wk | 3 (12%) |
| 20 h/wk | 12 (48%) |
| 20-25 h/wk | 4 (16%) |
| <26 h/wk | 2 (8%) |
| Previous RRT modality | |
| Facility HD | 18 (72%) |
| PD | 5 (20%) |
| Home HD | 2 (8%) |
| Transplantation | 2 (8%) |
| Time to closest CHH (traveled 1 way) | |
| 0-10 km | 17 (68%) |
| 11-50 km | 6 (24%) |
| 51-100 km | 2 (8%) |
| >101 km | 0 (0%) |
Abbreviations: CHH, community home hemodialysis; HD, hemodialysis; IgA, immunoglobulin A; PD, peritoneal dialysis; PKD, polycystic kidney disease; RRT, renal replacement therapy.
Some participants had experienced more than one previous RRT modality.
Figure 1Thematic schema of connections between themes. Community house hemodialysis (HD) offers flexibility and freedom to patients by allowing them to participate in daily activities, maintain employment, and travel. This in turn makes patients feel in control of their own health by encouraging independence and self-efficacy. Community house HD is considered a place of wellness that allows patients to avoid institutionalization and promotes a culture of extended-hour dialysis. By facilitating a home away from home, community house HD reduces the burden on family and patient and allows patients to maintain privacy and self-identity while also reducing the costs of home hemodialysis. Community house HD also improves the support patients receive from their dialysis peers.
Selected Participant Quotes of Patient Experiences of Community House Hemodialysis
| Subtheme | Representative Quotations |
|---|---|
| When home is not an option | “It would be good if I could get a machine in my house, but a lot of people can’t, so the community house is the better option if you can’t do it at home, it’s your home away from home” (Man, 40s) |
| Minimizing family exposure to dialysis | “Keeping this part separate from the rest of the family, which is I think that is a really good benefit is that you keep, you are still independent, so you get some, but you are still able to do this part this kidney treatment part separate from the rest of your home” (Woman, 30s) |
| Maintaining privacy and self-identity | “You come and do your thing and then you can go home. And that’s one of the reasons why a lot of pacific Island people do that and they want to keep that separation” (Woman, 30s) |
| Reducing the costs of home | “I think it’s cheaper coming here with the heating, definitely I prefer here to home, there’s no heater at home at all, cause we can’t afford one, so this is better and warmer for dialysis, I'd freeze at home” (Woman, 50s) |
| Getting a reprieve from home | “But in some ways better than home, quieter, you can lock yourself in your room, do your dialysis and be left alone” (Woman, 50s) |
| Having a normal life | “Being able to come whenever you feel like it instead of having to fit into the hospital routine. I come whenever it suits me. Those reasons make dialysis a lot more doable and liveable and part of your life as opposed to attending your dialysis appointment. It make it feel like it is just one section of your life rather than the hospital taking over your life” (Woman, 40s) |
| Maintaining employment | |
| Facilitating travel | “It’s really good to have holidays, the way the houses work if there was more houses then more people could go on more holidays and see their family” (Woman, 50s) |
| Building independence and self-efficacy | “More independence and more control” (Woman, 30s) |
| A place of wellness | “It’s better than the hospital, cause there aren’t sick people, at the hospital you see sick patients, since I went to the community house I feel more confident there, and everyone is well, you feel well there” (Woman, 50s) |
| Avoiding institutionalization | “I was dialysing at the clinic and that is so busy there it is like a traffic jam of people. There are 12-15 machines in one room and you are like sardines” (Woman, 40s) |
| Creating a culture of extended hours | “the more hours I do the more I feel better, so the houses allow me to do more hours, I couldn’t do at hospital and also, I can come in and do it” (Woman, 50s) |
| Building social connection | “We are a community, a family in the houses, we aren’t strangers on dialysis, we are there to support each other, there are no barriers there” (Man, 40s) |
| Supporting peers | “If people are new, [I ask them] ‘Are you new? Do you want me to stand at the doorway?’ And then I go ‘How’s it going’ and I leave them on the machine, I will go get a coffee and their door is open if you panic and just sitting there, there will be people in the room who know exactly what it is like to do the first one by yourself and we all go ‘bro, I have been there before you’” (Man, 60s) |