Of the 64 potential participants, 10 consumers declined to be interviewed and 21 were not included in the study for the following reasons: an initial contact letter from Home Care was not sent (7); they could not be reached by telephone to set up an interview (4); they did not receive any home care services (2); or they could not be interviewed (8) (poor health , psychiatric problems , limited English ). Of the 33 consumers who took part in the study, 26 were interviewed in person and 7 by telephone.
Slightly more than half of the consumers (59 percent) were female. The mean age of participants was 65 years (range 21–89 years) with the following age distribution: 20–39 years (15 percent), 40–59 years (15 percent), 60–79 years (50 percent), 80 years+ (20 percent). Two-thirds of participants lived with a family member, one-third lived alone, and half of the group were retired. There were no major differences in the sex and age distribution of the residents in each geographic area of the health region. The majority of respondents in the personal interviews reported their nationality as Canadian (20/26). Six other nationalities were self-reported with one respondent in each of the following categories: American, British, “African” (country not specified), Dutch, Lebanese, and Pakistani. Information was not available on the nationality of nonrespondents or those interviewed by telephone. The majority of home care consumers received nursing care (20/33), which most commonly was nursing support for a home I.V. (9/20); 6/33 consumers had occupational, respiratory, or physiotherapy. Four diagnostic categories accounted for about 70 percent of the consumers in the study: musculoskeletal (30 percent), circulatory (20 percent), digestive (10 percent), and injury (10 percent).
In most respects the characteristics of the participants in the study were similar to the sample frame of consumers who were eligible for the study. The exception was the diagnostic code indicating a nervous system or mental disorder. In the group of consumers who were not interviewed, four consumers had this diagnostic code, whereas no consumers had this diagnostic code among those who were interviewed.
The Meaning of Coordination to Consumers
Three aspects to the meaning of coordination emerged from the interviews: “Terms,”“Components,” and “Consumer Roles.” They are presented in . “Terms” are single words synonymous with coordination that could be clustered into two groups: (a) terms that referred to coordination between providers, including cooperation, teamwork, and connection; and (b) terms related to the processes of care including continuity and timeliness. The two other aspects of coordination, “Components” and “Consumer Roles,” are discussed below.
Coordination—Three aspects to the meaning of coordination: Terms, Components, and Consumer Roles
Components of Coordination
Three components of coordination were identified: communication, knowledge, and consumer focus. The most consistent component was communication. One consumer defined this as: “Communication, knowing what the plan is and following it through.” Two types of communication emerged as important. One was communication between health care providers: “I go and see my Doctor here, (Dr. H.) and Dr. C. gets all the dope on it. The communication is fantastic.”
The second aspect was communication between health care providers and the consumer: “I hadn't been home but a short time when the first call came. The communication was the big thing.” The importance of communication was also identified by consumers who identified problems: “It turned out to be a big fiasco…It was just a lack of communication, lack of people knowing what to do.”
The second component of coordination was knowledge. There was an expectation that staff members at all sites in the system would be informed about procedures or services that consumers needed. A patient who had a midline I.V. inserted to allow her to receive intravenous antibiotics at home had problems with the I.V. When she went to the emergency room of the hospital (where she had been told to go), the staff there did not seem to know how to handle the problem and eventually just removed the I.V.
The basic [problem] was just the fact that people weren't knowledgeable in the actual home I.V. program. If they're going to go ahead with the program, maybe they should make sure there's people that are trained. (Female, Age 35)
The other aspect was knowledge about the individual consumer. One consumer had a severely injured arm as a result of a car accident in another province. He observed:
I could tell the difference in the hospital nurses, in the OT and physiotherapy people, as to whether or not they had actually bothered to read my chart or had seen my X-rays… It's one thing to say “You've got a broken arm.” There's another thing to see my X-rays with all the little wee bone chunks and 20 screws and 2 metal plates… The key point here being that my left arm was shattered, not broken, shattered. (Male, Age 39)
Consumer focus as a component of coordination meant involving consumers in what was going on:
INTERVIEWER: Now, any pointers or any comments about what kinds of things that you think are important about coordination for people who are in hospital and coming home?
I think if they do everything the same way as they did to me. They involved me more and I knew more about everything than I expected to
. I think that's about as much as they can do. (Male, Age 21)
Another aspect of consumer focus was the need for an individualized approach. This was expressed by the following consumer who indicated her transition between hospital and home went well because Home Care had “recognized her special needs.” In the hospital, however, she felt the staff did not understand her individual health needs. “There were set timetables for this, or for that, or for the other thing but nobody was paying attention to me that I might not fit into their timetables.”
A very dramatic finding that emerged from the interviews was the importance of consumers in coordinating their own care. This came up in more than half (17) of the 26 personal interviews. It was a factor for men and women and for all age groups. This consumer involvement may include a variety of actions that have been classified as consumer roles: communicate, monitor, prepare, and manage. These roles are illustrated below.
In the following example, the home care nurses would call the patient to ask how often her doctor wanted her dressings changed. The nurses would then alter the schedule of home visits accordingly.
CONSUMER: When he changed it [the number times the dressing should be changed] from twice a day to once a day, the nurse…that usually comes in, phoned me that afternoon after I'd been to the doctor and asked me what…what, you know, he said. She changed it [her home visits] down to once a day.
INTERVIEWER: So the nurse basically arranged her visits through you? CONSUMER: Yes. Through me. (Female, Age 50)
Other consumers indicated it was up to them to carry through with their therapy and keep track of how they were doing.
She checked my exercises. I'm just carrying on with the exercises the nurse in the hospital gave me. And I keep a chart for myself to see if I'm going up or going down or what I'm doing. (Female, Age 82)
Consumers would seek information from their own sources about what to expect before going into hospital or coming home.
I did quite a bit myself before I went into hospital. I phoned people that had been in the hospital or had been in surgery and I asked them what I was supposed to take.
And another thing is that I asked them everything that I could about what, like after care or things like that. And they told me. (Female, Age 79)
The management role of the consumer was evident with a consumer who was very involved in adapting his environment both in the hospital and at home, to allow him to manage with severe injuries to one side of his body.
I've basically kind of fixed up most of it myself. I think what it comes down to is who's the coordinator? The coordinator seems to be me, the customer. (Male, Age 39)
The extreme example of the manager role was an ex-Navy man who was very def-inite that to make things happen in health care, either in the hospital or at home or in the transition between the two, people had to take charge themselves.
INTERVIEWER: What would you tell your buddy about the experience of being in hospital and coming home?
CONSUMER: Don't leave it to them. Take your situation in your own hands. You have to take your situation in your own hands. (Male, Age 76)
The consumers in the above excerpts played a number of active roles, including some who actually managed the coordination process. However, as the following respondent pointed out, not all consumers are able to take on an active role unless they have some assistance.
CONSUMER: He didn't bother because he was more concerned about just getting me out of there. So I could coordinate whatever, but he just didn't understand that it wasn't that easy. Especially for me being blind.
INTERVIEWER: So what kinds of things do you think are important about the coordination of services for people who leave hospital and require care at home, from your experience?
CONSUMER: I think there needs to be teamwork, effective and clear team work, like, what am I trying to say. The doctors or nurses, well probably the doctors, should know what the resources are, even within the hospital, even if all they know is to call social work. They should know what the other options are instead of just handing it over to the patient because sometimes we don't know. (Female, Age 23)
The Transition Experience
Participants were asked whether they preferred to be in the hospital or at home. All consumers except one (25 of 26 personal interviews) preferred to be at home. This was usually expressed as a very strong preference: “I desperately wanted to get out of hospital and come home so they [home care nurses] fulfilled that need for me.” Only one consumer expressed a slight preference for the hospital. He needed a walker to move around and liked the hospital because the floors did not have carpet.
Most consumers indicated the timing of their discharge from the hospital was about right. This was often part of a positive, coordinated, successful transition experience: “The transition was good and the staff both ways have been amazing.”
The following quote illustrates the interplay between timing and site preference. When this consumer was ready to leave the hospital, his preference was to be at home.
The doctor, would have liked me to be discharged. I had to apply pressure to stay a couple of days longer than they would have liked.
We were ready, when I was discharged, (two days later) we were in complete agreement with the time and felt that was the right time. (Male, Age 76)
The consumer characterized his eventual transition from the hospital to home as “a very positive experience” because he and his wife “were ready for it.”
Two other consumers wanted to stay in the hospital longer but were not successful in delaying their discharge from the hospital. One consumer was a 77-year-old woman from Pakistan, the other a 59-year-old man from Africa.
Preparation for Returning Home
Most consumers indicated they felt prepared to come home. This preparation was manifested in a number of ways including knowing what to expect when they were discharged and having the necessary training and information (such as written instructions) to manage at home. Consumers who were prepared to go home often received information more than once and in a variety of formats.
Part of being prepared was knowing what to expect at discharge. The following consumer indicated he knew what to expect about his medical condition when he returned home because he had been involved in the decision to proceed with his surgery: “They explained it to me on several occasions, not just once.”
A second aspect of preparation was information. This included training consumers to manage the equipment or therapy they would need at home. “Oh, yes, I was prepared because I had been down (to the physiotherapy department) and I had instructions.”
Written instructions were an important and recurrent theme identified by consumers who indicated they were prepared to come home. Instructions were provided for various stages of the care process but were particularly important at transition points, such as prior to hospitalization and the day of discharge.
Consumers who felt prepared to go home had often received information more than once in a variety of formats, had been given guidance about how to handle anticipated problems, and had a phone number to call as a backup: “They gave me a complete folder of everything—what to do if this happens, if this happens, if this happens. And if none of that worked then I was to call immediately.”
System Support for Coordination
While responding to questions about the nature of coordination, consumers identified a number of aspects of the health care system that were important to coordination. Some of these were specific services, others involved health care providers working across organizational sectors and lastly, the concept of attending to the consumer's voice emerged.
Specific services included: (a) regular phone calls by home care personnel to the consumer and a phone number consumers could call if they had problems; (b) health care staff having the time and training to provide services that consumers felt they needed; (c) providing written instructions; and (d) keeping the chart in the consumer's home.
The concept of service providers crossing sectors emerged in consumers' comments explaining why they felt their care was coordinated. The most frequently mentioned example was providers from one sector (the home care coordinator) going to another sector (the hospital) to see the consumer.
The coordination started with the Home Care people at the hospital coming to my room, showing me how to use the pump, how it was going to be handled, what they were going to do and then giving me all the information on the Home Care people who would be coming [to his home]. (Male, Age 51)
In the next example, in addition to going to the hospital, the home care nurse also obtained help from hospital personnel to assist with the inserting a midline I.V.
INTERVIEWER: Did you feel there was coordination between the hospital and Home Care?
CONSUMER: Yes ….Actually she [the home care nurse] put it in and then the nurse at the hospital just assisted her… Even there, both the Home Care nurse and the hospital nurse were working together. (Male, Age 21)
Another activity that signalled coordination for the same consumer was the nurse from one sector (home care) facilitating access for the consumer to services in another sector.
My foot was still quite swollen.
They were concerned that maybe the specialist, Dr. L., would want to keep the I.V. in longer. She [the home care nurse] phoned Dr. L. up and made an appointment for me to go in to see him. (Male, Age 21)
If there is going to be consumer involvement in coordination, however, the organizational environment and health care providers need to allow and encourage this involvement:
I just know those resources are there. I was going to mention it but he wasn't listening to me anyway so it didn't seem to matter if I said it or not. (Female, Age 23)
This excerpt suggests that for consumers to assume a role in coordination, they need an organizational “voice,” that is, they need to feel that health care providers are listening to them.
The Successful Transition
A successful transition was defined as the consumer being able to function well once they returned home. Support and confidence were the two variables that emerged as important to both the transition process and to the consumers functioning well in their home environment after the transition.
As the study progressed, and support began to emerge as an important variable, the interview guide was modified to ask consumers if they felt they had support at home and to explore what contributed to a feeling of support. Consumers identified a number of sources of support including: family members—“Because all my three children are here. And all of them are dedicated kids” the community—“and I've got good neighbours. My neighbour next door comes in almost every day” and the health care system. Excerpts from the following interview illustrate a number of aspects of health care system support. The appropriate care was available but only services that were needed were provided.
CONSUMER: I needed 24-hour care when I went back into the hospital.
INTERVIEWER: You mentioned you don't seem to need the care 24 hours a day now.
I need somebody that knows what they're doing to come in. … I think the level of care at home is as good as it is in the hospital. The only difference is that it's not 24 hours.
It's there and it is available but it's not something that's kicked in automatically…To me, that works great because it's not wasted. (Female, Age 50)
Telephone contact was another important source of system support identified by many consumers.
I had all these phone numbers. And I phoned back, I phoned to the Home Care nurse, actually. And she gave me everything she could think of to do. Then she said, well, I'll give you two more things to do and if neither of these work then you'll probably have to come back up here and I'll look at it. (Male, Age 21)
One of the aspects of the transition process that was examined was whether the consumer felt confident about the transition and what contributed to confidence. Confidence seemed to be related to system support and preparation.
INTERVIEWER: You were saying you felt pretty confident managing things at home. You had the written stuff, and they'd gone over it with you, and they'd taken X-rays.
CONSUMER: Yes. The Home Care Nurse was really helpful too. She checked my toe each time she came and made sure it looked like it was getting better. (Male, Age 28)
CONSUMER: I was looking forward to it [going home] and I was very confident. It was the right thing—that day. But I didn't before.
INTERVIEWER: What helped you to be ready do you think?
CONSUMER: My condition. Because I had done a considerable amount of walking and exercise, which prepared me for it. (Male, Age 76)
For one consumer, control related to the timing of his discharge from hospital was a significant issue. However, control did not emerge as a major issue for other respondents.
is a diagram of the relationships that appear to contribute to a successful transition (defined as the consumer being able to function well at home).
Figure 2 Transition—Confidence is affected by preparation and support; support enhances confidence and preparation; confidence, preparation, and support contribute to a successful transition. Support and preparation appear to be imporatant to functioning (more ...)