Effect of an innovative model of complexity care on family caregiver experience

Study design

Given that the objective was to elicit the personal stories and lived experience of family caregivers of elderly patients enrolled in the IMPACT clinic, a qualitative design was deemed most appropriate. The constant comparative method of grounded theory¹⁹ was used to capture comparisons across different family caregivers (ie, their views and experiences) as well as comparisons across time for individual caregivers (ie, experiences in the IMPACT clinic compared with previous models of care). Ethics approval was received from the research ethics board at Sunnybrook Health Sciences Centre in Toronto, Ont.

Participant recruitment

The team identified a convenience sample of 20 patients who had attended the IMPACT clinic with a caregiver. Study inclusion criteria stipulated that participants must be the patient’s primary caregiver and must have personally attended the IMPACT clinic at least once. Paid caregivers were excluded. An attempt was made to include a diverse cross-section of caregivers based on age, sex, relationship to the patient, and living arrangement. A demographic profile of the 13 study participants is presented in Table 1. Ten of the caregivers (77%) were adult children (6 daughters, 4 sons) and 3 were spouses (2 husbands, 1 wife). Six caregivers lived with the patient; among the others, the distance from the patient ranged from 5 blocks to out of province. A little more than half of the caregivers were retired and the rest were in some form of paid employment.

A research coordinator (S.H.B.) telephoned each patient for permission to contact the patient’s caregiver to discuss the caregiver’s experience with the IMPACT clinic. The caregivers were provided a description of the study and invited to participate. Interviews were scheduled at the convenience of the caregivers, and transportation or parking was covered by the funding grant if they chose to meet at the clinic rather than at their home.

Data collection and analysis

Based on a review of the literature, a semistructured interview guide was developed by the team and then pilot-tested and revised. Topics included the caregiver role (both past and present), health status of the patient, caregiver strain and wellbeing (physical, emotional, social, etc), and caregiver experience with the IMPACT clinic. For 2 months, individual face-to-face interviews were conducted jointly by a social worker and a researcher (S.H.B.) trained in qualitative methods (neither of whom were employees of the clinic). Interviews were transcribed verbatim by a professional transcriptionist and then verified by the research team to ensure accuracy. After each interview, the transcript was coded independently by 3 members of the research team (L.A.N., C.S.T., S.H.B.) to identify key themes and categories. Data collection and analysis were performed iteratively such that emerging themes were pursued in later interviews using the constant comparative method¹⁹ to seek corroborating evidence and identify outlier cases. A total of 13 interviews were conducted, as saturation was reached at that point and no new additional themes were emerging. To enhance the credibility of the interpretation that emerged through the analysis, a member check was performed by sending a written summary of the key findings to each of the interviewees.

Caregiver validation

A common theme that wove through the interviews was that the IMPACT clinic provided “space” for caregivers to tell their own stories and contribute to clinical encounters. Many interviewees recounted how they had been expressly encouraged by the team to voice their views and opinions and to share their ideas and suggestions; in most cases, it seemed that this approach differed substantially from the caregivers’ previous experiences. One interviewee, the sole caregiver for his 88-year-old mother, stated the following:

I think the team approach was super …. We were all together and I was able to absorb and hear and discuss and question and that sort of thing …. They didn’t make me feel shy either, you know, so I didn’t feel reluctant to be forthcoming. I mean, my understanding was that’s what was wanted. Everybody wanted me to say stuff so there was nothing I should be concerned about. So that access was huge. I was amazed that it was possible and that it could happen this way. I think it’s a huge benefit. (Caregiver 5 [CG05])

Participants noted the importance of listening to caregivers’ voices and attending to caregivers’ needs, distinct from those of patients. This was emphasized by a participant who was experiencing caregiver strain after taking a work leave of absence to provide daily care to her 82-year-old mother who lived at home alone and had recently become wheelchair dependent:

From the team standpoint, the way everybody works together, the way they hear not just the patient, but whoever happens to be the family .… They work with Mom and with me so it’s like they have 2 patients, especially at first because I was a basket case then. It provides emotional security and support not only for the patient, but the family too. (CG02)

Another interviewee, who was caring for her mother while working full-time, expressed relief for the support of the team and appreciation of the opportunity to contribute important pieces of information that were missed:

I think it made me feel, I guess, somewhat relieved that everybody was on top of things. And I had a chance to ask questions, too. I remember saying to my mother, “You didn’t mention something” and she said, “Oh, I forgot.” So if I wouldn’t have been there, she wouldn’t have mentioned it. (CG08)

Caregiver engagement

The second key theme extends from the first. Feeling validated and acknowledged as valued members of the care team, these caregivers reported taking full advantage of the opportunity to ask questions, raise concerns, and undertake challenges. For many, the role of caregiver was a new role and brought with it considerable uncertainty and anxiety, as the husband of a 73-year-old woman recently diagnosed with dementia explained:

I generally feel much calmer. Up until IMPACT, I had no help at all in trying to deal with what was happening and I didn’t really have a good understanding of how to respond to it. After the 2 IMPACT visits, particularly the part where I was interviewed individually away from my wife, I found that very, very helpful and calming and I think it created a much healthier situation in our home environment. (CG03)

He went on to describe his own evolving role as caregiver:

I’ve paid more attention to what is going on. I’ve been on the Internet looking up things. I’ve learned some of the terms, like hippocampus. I feel that without the IMPACT team I don’t know where this would have gone because I was really feeling isolated. So I don’t know how much that IMPACT program costs, but as far as I’m concerned it was worth the money in lessening my anxiety and maybe helping me provide better care for my wife as we move along here. (CG03)

The participants’ accounts clearly indicated that effective caregiver engagement requires a flexible care model in which the unique preferences and circumstances of each case can be best accommodated. The salience of this point was illustrated by the contrasting feedback provided by caregivers regarding the timing of follow-up visits:

The time between our visits to the IMPACT clinic was far between. It would have been much more helpful had it been a more consistent process … [with visits] closer together and they could have followed through on each recommendation. (CG01)

I had the sense that there could have been more time between sessions, not necessarily less often, but the interval could have been maybe a little longer. I thought that the time between sessions was a little short. You didn’t get a whole lot of time to sort of put stuff into practice. (CG05)

This caregiver elaborated by pointing to the inherent challenge involved:

So that’s hard to judge, you know, that’s really hard to schedule because I think it’s very individual. Each case is unique so how do you … how do you systematize that? It’s got to be real difficult to approach that. (CG05)

Caregiver empowerment

Finally, caregivers’ accounts of their experiences with the IMPACT clinic strongly reflected a greater level of understanding of the caregiver role and an enhanced level of confidence in their own ability within the role:

I certainly believe in IMPACT … I think it’s a real confidence booster. (CG06)

Before I came to the IMPACT program, I had some reservations about [my husband’s] behaviour. I was not sure of what was happening so I was a bit concerned … especially in my culture, it’s something that you never talk about and so it made it very difficult. But when I listened in to the different disciplines, everything was made clear to me and I found that his condition is an illness and I get a basic understanding that it’s an illness … then I have to know about it to deal with it a bit better. (CG11)

[I’m] more confident in knowing what I’m doing and if I’m thinking of doing some things I have a better understanding of what impact they might have. Just more confidence in going ahead with those kinds of things …. I’m not reluctant about wasting my time. I’ve seen responses. I’ve seen impacts of activities and things that I’ve done for her. I just feel more comfortable—more comfortable and confident. (CG05)

This caregiver described how his new-found confidence empowered him to become substantially more involved in caregiving for his housebound mother:

I feel I’m doing the right things and I have a better understanding of how to get involved on a day-to-day basis. I mean, I call her every day if I’m not there. I go twice a week, sometimes 3 times, but I call her every day as well and I think that makes a difference to her outlook and her attitude so I know she appreciates it. (CG05)

Implications

The IMPACT model is ideally suited to family practices with access to an interprofessional team, but the following key principles could be adapted for individual family physicians: routinely involve caregivers in visits, allow space to hear caregivers’ perspectives, and develop care plans together (ie, physician, patient, and caregiver). Follow-up research could involve larger study samples across multiple sites and geographic locations and variable caregiver-patient populations.

Limitations

Although the current study provides insight into the potential benefits of interprofessional practice models for family members caring for complex patients, the relatively small sample size and convenience sample, as well as data collection from one site, might limit generalizability. Further, the catchment area of the study setting skews toward populations of higher socioeconomic status. Finally, most of the caregiver participants were older and did not have the additional demands of child care, and most were retired or working reduced or flexible hours.