Researcher Robin Cohen on the needs of family caregivers, the value of volunteer engagement, and the role of research in creating compassionate communities
“The philosophy of palliative care says that caregivers are part of the unit of care, and of course with resources more and more stretched, that is just not happening. They are considered caregivers rather than people in need of help themselves. We need to focus more on caregivers.”
By Devon Phillips. Robin Cohen, Research Director for the Division of Palliative Care in the Departments of Oncology and Medicine at McGill University, has focused her research on optimizing the quality of life of palliative care patients and that of their family caregivers. She and her team have recently implemented and formatively evaluated a Volunteer Caregiver Guide service designed to support and empower family caregivers of palliative care patients at home. This innovative research underscores the fact that caregivers are an important part of the public health conversation and points the way for communities to mobilize their efforts to create sustainable, compassionate services. I met with Robin at her home in Montreal, Quebec.
Q: How did your research project on a Volunteer Caregiver Guide service get started? What was the motivation behind this project?
A: It got going because I had moved my primary research focus from patients to their caregivers. Caregivers are neglected in terms of research and our society also expects them to do more and more. As well, the Chair of Palliative Care McGill, Dr. Bernard Lapointe, really supported this − he had the idea that maybe we could get volunteers involved in helping caregivers who were caring for their loved ones at the end of life. Once we got funding for the research from the Max Bell Foundation, including for a volunteer coordinator, in January 2012, the project started. The project was completed in December 2015.
Q: What do you mean that caregivers are neglected?
A: First, caregivers are neglected in terms of research so there is a lot less research on them. We know from the literature that volunteer services in the home have focused primarily on the patient, not the caregiver.
Caregivers really need services because they have physical problems, psychological problems, financial burdens- and yet nobody is doing much in terms of services for them. In our research, in addition to the support our program provided directly to help them maintain their own wellbeing, caregivers needed a whole range of services from financial help, immigration advice, care for the patient, housecleaning, and even mental health services.
Q: Tell me about the purpose of this research project.
A: I don’t believe that our healthcare system is going to be able to provide everything for everyone which is why the caregivers are getting neglected. It’s not that the home care nurses or physicians don’t care, it’s that they just don’t have time. I think communities need to do as much as they can to help each other out and then the rest needs to be done by professionals. Our communities have kind of lost that function. So part of the purpose was to see if we could engage volunteers to take on what some of the community should be doing.
The ultimate goal was to see if we could maintain the family caregivers’ health and wellbeing, or make it as it good as it could be, while guiding and supporting them through a volunteer program. To maintain their health and wellbeing you have to help caregivers find resources to help them provide care to their loved one, so we aimed for that too.
Q: The health and wellbeing of caregivers sounds like a public health issue.
A: Yes, it is a public health issue. When caregivers get sick themselves, they use healthcare services. And if the caregiver is not doing well, then the patient gets admitted. Our project focused on prevention. We wanted to prevent caregivers from becoming sick themselves.
Q: This project seems extremely innovative.
A: Yes it is! This has not really been done before. Our project is the missing piece. The other programs are all geared toward helping the patient, or giving the caregiver respite care, that is how they have been conceived. I mean no one asks how the caregiver is. Not even the family walks in the door and asks the caregiver, “How are you?” They all want to know how the patient is. This is understandable. Our volunteer guides ask the caregiver, “How are you?” and they say, “We are here to see how you are doing”. So yes, this service is very innovative.
Q: How was your project different from other research projects focused on caregivers?
A: In our project, the final goal was to maintain the caregiver’s wellbeing, and that is something that almost nobody focuses on. If there are any sorts of interventions, the focus tends to be on teaching them how to be caregivers which again, the more they know the better they’ll be, but the real goal in our project was for the caregiver to maintain their own health.
Q: What period of time in the caregiver’s life was looked at for the purposes of research?
A: We started with the last three months of the patient’s life, estimated, and then into the first three to six months of bereavement. Due to recruitment challenges, we did end up taking some referrals earlier. Sometimes the clinicians estimated the patient had six months to live and that was a somewhat different population where prognostication is harder. A few patients lived closer to a year so the involvement of the volunteer guides was longer in those cases.
Q: How did you find people to become volunteer guides for caregivers?
A: We advertised here and there but in the end, most came from the volunteer training program through Palliative Care McGill. These people were already interested in volunteering and had signed up for that. And to my surprise, we had a lot of people who were already volunteers on the palliative care units. They were people who were looking for a new challenge.
Q: Is training required to be volunteer guide? How many signed up?
A: You take the training to be a palliative care volunteer first, and then you take a five-session training program to be a caregiver guide. We ended up with 10 trained guides and 23 caregivers. Many people were interested because it was a participatory project on their part and they were brave enough to jump into a new project. We knew where we wanted to head but we weren’t sure how it was going to play out.
Q: How were the caregivers recruited?
A: The caregivers were referred by physicians or nurses supporting people at home, all in the context of palliative care. We wanted to make sure that the patient had a good palliative service involved so the volunteer would not walk into a situation where everything would have been directed to helping the patient which is not what this research was about.
Some of our caregivers were referred through Mount Sinai and the Jewish General Hospitals for example. Referring physicians did not have to recruit caregivers, all they had to do is ask a caregiver, “Would you be interested in hearing about this project that is a service for you?” And if they said yes, then they gave the person’s name and contact information to the research team, who followed up with the caregiver and took it from there.
Q: How were the guides teamed up with the caregivers?
A: The volunteer coordinator who was hired as part of the research project interviewed the caregivers to get a sense of who they were, and then they matched volunteers and caregivers in terms of area of the city, whether it was possible to travel, language, and also in terms of personality. Some people are just a better match than others, and then with that information, the guides would try to meet with the caregiver once a week. We intended the meetings to be mostly in person but sometimes they were over the phone, especially during the bereavement phase.
Q: What services did the guides provide?
A: We wanted to provide services to bolster caregiver coping. We utilized Folkman and Lazurus’ transactional model of stress and coping, which includes problem-focused and emotion-focused coping, later modified to include meaning-focused coping. For example, for problems that might be resolved, the guides are trained to teach the caregivers to problem-solve in a more systematic way. We teach them to try emotional-focused coping which is how to manage your emotions when you can’t change the situation. Meaning-focused coping is when you look at a situation as meaning a certain thing and sometimes you can cope better if you look at it in a new way, or change your worldview to make it less stressful. For example, a caregiver may feel guilty about spending much less time with her own children while she cares for a parent. If instead she sees this as a good chance for her husband to spend more time with the children, that they are getting a chance to see that dad can carry out roles that mom usually does which allows them to see another side to their dad and to what fathers can do, she may feel less guilty and see a silver lining to the situation. The children will also learn how at times we all need to pitch in to help our parents. So while the caregiver may still miss the time with her children and they may miss her, having a new perspective can reduce the distress associated with the situation.
And the other thing we did for the caregivers was to help them find resources in their community. This process takes time and energy and a lot of caregivers do not have time to look. Also it’s a very complex system with no one place online where you can go and find out what’s available. Nothing like that exists. It’s awful. So our volunteer coordinator and our volunteers often spent quite a bit of time looking online and consulting with in-hospital coordinators and nurses we knew to try and to identify available resources for the caregivers.
Some caregivers didn’t even think of getting help because they did not realize there was help out there - people thought they had to go it alone. Or, they thought they could go it alone and several caregivers said it was really helpful that volunteers said to them, “You are going to crash if you don’t get some help at some point. If you want to continue alone, be aware it is going to get heavier so it is good to get services set up.” That guidance was considered really helpful and many caregivers noted that in their feedback to us. Otherwise they would have just kept on doing it themselves, thinking that it was either going to end sooner than it did, or, they just didn’t know what they were getting into and how difficult it would be at the end.
Q: How did you evaluate this program?
A: The evaluation was formative and qualitative. We evaluated not to say, “Yes this works or no, it doesn’t work”, but to check over time what was working well and what wasn’t, and why, and then change what wasn’t working to make it better and then continue evaluating. So we collected data through interviews with the family caregivers, the project coordinator and the volunteer guides on an ongoing basis, as well as with the healthcare professionals who were referring. We did not want to burden the caregivers so we interviewed them just twice − once during the caregiving phase and once in bereavement, if they allowed. We also evaluated to see what type of impact, if any, the service had on their own wellbeing or their ability to provide care. We were open to learning about both positive and negative impacts, although almost all were positive or neutral.
Q: What were some of the key findings from the caregivers’ point of view?
A: Many caregivers expressed how helpful it was for them to have someone else looking out for their wellbeing as even they themselves did not originally place much importance on that, which we knew from previous studies was a problem. The caregivers appreciated both the volunteer guides’ knowledge and the experience they brought (personal or through their interaction with other caregivers and patients on the palliative care unit). They also appreciated someone they could talk to – or vent to – who was not a family member, friend, or healthcare provider and who wouldn’t judge them. Everyone else had a relationship with the patient, so there were things the caregiver wouldn’t say to them that they said to the volunteers, such as expressing frustration with the situation. Different caregivers had different needs and their needs varied over time. A few found that they needed something specific at a certain time, and once that situation was resolved, they didn’t need the service, so it was stopped. In the bereavement phase, the caregivers really appreciated having someone to talk to about what the end of the patient’s life was like, and the guides relieved the guilt of some caregivers by explaining how, even if things weren’t perfect, the caregiver had done a very good job. The guides also provided valuable suggestions and encouragement to help the caregivers establish their new lives.
Q: Did you encounter any challenges?
A: Part of the challenge was that this was a research project and therefore we could not sell it in any way and this affected recruitment. You cannot promise benefits in research for which there is no evidence. But now the research part is complete, we have data, and a service starting up could describe how the program will benefit caregivers. We can make an attractive pamphlet and tell people what the guides will be helping with and then clinicians can hand the pamphlet to people and caregivers can self-refer.
Another challenge was that sometimes caregivers don’t even see themselves as caregivers. They simply see themselves as the daughter doing daughterly things or the spouse who says, “I am just caring for my husband or wife”. So it wasn’t always obvious for everyone. However, some caregivers saw the value of these services right away and many later said, “Oh, we did not know what this was going to be like but it was great in the end.” We learned together with the caregivers as we went along.
Q: What did that “learning together” look like?
A: Even though the guides were trained, in reality you can’t train them to handle all possible situations so it was not unusual for them to say to a caregiver, “I am not sure what to do but let me talk to the team”. An aspect of this project that was innovative was that we would get together at team meetings to discuss issues that arose. Team meetings took place every few weeks. The guides would sit down at the meeting and say, “Look, this is the problem my caregiver is having, what do you think we could do? How can we help them?” And we would all put our heads together and come up with some ideas. Then the guide could go back to the caregiver the next week or even phone if it was something urgent. There were lots of ideas that came out of the team meetings. The guides all said they learned a lot from each other, even if it wasn’t their caregiver that needed the help. So although we had formal training at the beginning, the team meetings proved to be the best learning experience by far.
Q: Will the learning be folded into a next iteration?
A: Yes, now that we have guides who have experience, they will help mentor the others as we start up with new programs. We have a second group that was trained and before they even had caregivers assigned to them, they sat at the table when we had team meetings so they would be learning at these meetings. The guides we have now, our core team, are willing to talk to others who want this program in their communities and want to help people set it up.
Q: Were there any findings in this research project that were surprising to you or your team?
A: Definitely. One surprise was that volunteers on the unit were also interested at the same time in being involved in this new project. Another was how useful the team meetings were as a learning tool and how much each caregiver benefited from the combined knowledge of having the whole team behind them. The other thing that surprised me was that we had a few caregivers who were asked this question directly, “Do you think this help affected the times the patient went to emergency or hospitalization, either they went in earlier or they went in later?” Several said it did not make a difference but several caregivers said, “I would have given up long before; this service really helped me maintain my sanity, cope, access resources and on.” So there are probably some cost savings there.
Q: What is happening with the project now that the research phrase in complete?
A: We definitely want this program to keep rolling out. We are currently making the switch from a research project to a sustainable service with the volunteer guides. So as we make the switch I will not be the lead anymore. But of course as a researcher, I will want to study it!
The core group and I have been figuring out how to make the program more self-sustaining and we believe this is possible. We are adapting the program so that experienced volunteers would be mentoring new ones.
The Caregiver Guide Service was set up as a new Hope & Cope program and we hope to continue this way. Hope & Cope is a not-for-profit organization that provides peer-based psychosocial support to cancer patients in Montreal and their families through various programs. We are checking to see if we can recruit through social media, like Facebook. When we present at conferences, there is definite interest. For example, in BC, they like the idea, and they are saying, “Let’s go!”
Q: So other groups in Canada have expressed an interest in the Volunteer Guide Service?
A: Yes! Chilliwack Hospice in British Columbia is going ahead with this service. They found out about it at the Canadian Hospice Palliative Care Association (CHPCA) conference where we were presenting. They already have many different volunteer programs for people at home so the infrastructure is in place. They also have a full-time educator who is there to teach the volunteers and family caregivers and she is so excited about our program. We are sharing our model but they will be developing even better training and bringing their own experience with volunteers to this service, which they will share with us. We have met with them in person and on the phone to support them as they get started. It’s all happening − they will start training in June. I am hoping we can study this program as well. We are also in touch with other services considering using and adapting our model.
Q: What about interest from other countries?
A: When I presented it at the 4th Annual Palliative Care Public Health conference in Bristol, UK last May there was a lot of interest, particularly in the UK because they are well set up to work with volunteers.
Q: Can other groups who are interesting in establishing their own volunteer caregiver Guide service based on your model do this? Are the program materials readily available?
A: Anyone who wants to start their own service can. The point of doing research is to generate knowledge that can be shared and used by anyone. The Guidebooks we developed for our Caregiver Guide, in both English and French, will go up on the CHPCA website soon. They will be freely available to everyone.
Q: Do you need an already-existing volunteer infrastructure to provide this service?
A: Not really. If there is an infrastructure or a culture for volunteers, like in a volunteer-based hospice for example, that would be easier. When an agency like our CLSCs or NOVA is already going into the home, you can recruit caregivers through them. But the program is also buildable as we did.
Q: Who should people who want to participate in this project contact, whether they want to be volunteer guides, or they if they are caregivers who would appreciate this service?
A: We are not running the service at this time as we are working to revise it to function with much less use of a coordinator, so unfortunately it is not available for caregivers. They may be interested in other Hope & Cope programs (http://hopeandcope.ca/). For now people who want to volunteer or start a similar service can come to me. People who want to volunteer as caregiver guides in Montreal, depending on the experience they bring, may be able to join our core team and they can either work with us on how to move forward, or, we can keep their name on a list so when the project is launched again as a self-sustaining service (not a research project), we will contact them. The training for the caregiver project is free of charge, but you must first do the Palliative Care McGill volunteer training program and we anticipate that will take place in fall 2016.
Q: Will the findings from this research project be published?
A: Definitely. We will publish in scientific journals and also on the Palliative Care McGill and CHPCA websites.
Q: Do you have a final message about this research project you would like to share?
A: This is the most fun research project I have ever worked on! And that’s because we were really working all together as a team, our volunteers were amazing, and the caregivers too. We worked through the problems together. That was what I loved and the volunteers loved this too. Anytime you are part of a good team, it is so great!