Nurse and Doctoral candidate Jamie Penner on the role of a physical activity intervention in supporting family caregivers
“Family caregivers expressed appreciation that there was a program specifically focused on them and that this intervention gave them the permission they needed to engage in self-care.”
By Devon Phillips. Jamie Penner’s background in both physical education and nursing has translated into a unique research project examining the use of a physical activity (PA) intervention to support family caregivers who are looking after family members with advanced cancer. Jamie is dedicated to developing a simple-to-use, flexible, home-based intervention to assist family caregivers in incorporating PA into their daily lives, taking into consideration their unique needs, interests, and abilities. Jamie is currently a doctoral student at the Ingram School of Nursing at McGill University. I met with Jamie at the Jewish General Hospital in Montreal where she was presenting her research at the Palliative Care McGill Research Rounds.
Research Project Summary: Development and Pilot Testing of a Home-based Physical Activity Intervention for Family Caregivers of People with Advanced Cancer
The purpose of this two-phase study: 1) evaluate the acceptability of a novel theoretically- and empirically-based individually tailored PA intervention to address family caregiver self-care needs; and 2) assess the feasibility of a full, randomized controlled trial (RCT).
In the first phase of the study, 10 family caregivers received the PA intervention. Together the intervener and family caregiver developed an individualized PA plan and set weekly goals to increase PA based on the family caregivers’ needs, interests, and abilities. Family caregivers kept track of their PA using a simple log. Weekly phone calls were conducted to collect PA data, review PA goals, make any changes as necessary to the PA plan, and provide coaching and support. Family caregivers were also asked to participate in a follow-up interview. At each of these time points, family caregivers provided feedback regarding the acceptability of the intervention’s content, structure and process. They recommended some small changes to the structure of the PA log to simplify its use. Otherwise, it was deemed acceptable.
The second phase of the study involved pilot testing to assess the feasibility of a full randomized controlled trial. Twenty-six family caregivers of people with advanced cancer were randomized to the PA intervention (experimental group) or no intervention (control group). The intervention was delivered via 12 weekly telephone calls. Weekly PA log data were collected from both groups. Participants were asked to complete outcome questionnaires (affect, fatigue, self-rated health) at baseline, weeks 6, 9, 12 and participate in follow-up interviews. Data were analyzed using descriptive statistics and content analysis.
DISCUSSION
Q: What was the feedback from family caregivers who participated in the pilot project?
A: Family caregivers appreciated having a program focused specifically on them. They also found the coaching was helpful to find creative solutions to engage in PA in a context fraught with time constraints. Lack of time and feeling guilty for taking time for self-care were two of the biggest challenges we had to deal with. Generally, family caregivers felt PA helped them “feel better” and experience less stress. Several also mentioned that the PA program helped them take better care of themselves, which ultimately helped them take better care of their family member.
Q: What does the data mean from a clinical perspective?
A: Clinically, we see that family caregivers are able to engage in and adhere to PA. When we first proposed this project, we got a lot of feedback from clinicians and other researchers that family caregivers are way too busy for a PA intervention, but we found that even when the patient is very near to death, caregivers are still looking for support for self-care and are able to engage in a significant amount of PA when it is tailored to meet their situation. So, I think that this work has challenged the assumption that family caregivers cannot do more because they are too busy. The key is to take the time to understand family caregivers’ individual circumstances, and work with them to support self-care strategies.
Implementing this type of intervention will be largely about educating family caregivers and clinicians because the mainstream message for decades now has been that we need 150 minutes of moderate to vigorous PA, every week, or five bouts of 30 minutes of PA, to gain health benefits. But the guidelines are changing. PA can be accumulated in small bouts throughout the day or week and there is increasing evidence to suggest that even a lesser amount has health benefits. Essentially, the more PA that one engages in, the more health benefits gained, but some PA is better than none.
Q: Did you talk to family caregivers about what exercise they did and help them think out what they could do more of now? What was the intervention exactly?
A: This intervention is not a specific PA prescription per se, such as 20 minutes of walking three times a week on a treadmill. This is a health promotion counseling intervention. It involves collaboration between the intervener and the family caregiver to come up with an individualized PA plan based on the needs, interests and abilities of the caregiver, with the aim to increase their baseline PA over time. At our initial meeting, we discussed things like the benefits of PA, and any perceived barriers to engaging in PA. We talked about what kinds of activities the family caregiver enjoys doing, and how confident they felt that they could engage in PA if we tailored it to their situation. We also talked about any interpersonal and situational influences that might impact on engaging in PA. After discussing these things, we collaboratively came up with a PA plan. The family caregiver can choose any PA they want. If they feel that they can be away from the patient, and going to the gym is something they like, then they are free to do that. Most did not feel that they could be away. Many incorporated some kind of activity such as walking, biking, and stretching – something that could be done in shorter bouts, either at or close to home. They used self-monitoring by keeping track of their PA with a simple log, and the intervener called them once a week to discuss their goals, problem-solve any barriers, and provide coaching and support.
Q: How do you know that what they wrote in the PA log is what they did as opposed to just wanting to please the researcher?
A: This was a big discussion the research team had in the beginning when we were considering using a more objective measure of PA versus a simple PA log. When we considered all of the pros and cons, we chose the PA log because it was simple for them. Did we have a way to double-check it? No. To try to minimize any response bias, participants were instructed that an honest log of their PA, no matter how much or how little, would be the most helpful to the researcher.
The reason we decided against adding a technology to more objectively measure PA is because family caregivers already feel very burdened with all the things they have to take on. Caregivers said the PA log was “easy”. When asked if they would prefer another way of keeping track of their PA, such as wearing a pedometer or a Fitbit, the majority said, “I don’t want to have to learn one more thing.”
Also, caregiving in and of itself can be very physical, but we wanted caregivers to take time out to engage in self-care. Part of the debate around using a Fitbit was how we would parse out what was caregiving movement versus self-care activity. So the decision involved weighing factors such as participant burden, recruitment, retention, and the type of PA to be measured in this study etc.
Q: What is the difference between the control and the intervention group?
A: Both groups write down their PA and receive weekly phone calls, but the phone calls with the control group are only to get their PA data off their log, they do not receive the PA coaching and support that the intervention group receives.
Q: Who will deliver this intervention? Do you need to be a trained healthcare professional to deliver it?
A: Clinicians that are in the community, such as nurses, can be taught how to engage caregivers in this intervention and provide ongoing support. I think knowing the context of caregiving is very, very important to deliver this intervention effectively. We are dealing with a vulnerable population and having an understanding of what these family caregivers are going through with respect to their time, schedule, stresses etc., is crucial. It can certainly be delivered by nurses - and may very well be, as nurses are often the ones in most regular contact with family caregivers in the community – but it doesn’t have to be. Volunteers are also an important part of the health care team. In any case, whether it is a nurse or another healthcare professional, or a volunteer, I do believe that being trained to deliver a PA intervention such as this to family caregivers is important.
Q: Did you find that the intervention helped family caregivers find creative solutions to fit PA into their daily life?
A: Absolutely. I’ll give you an example. One gentleman loved to walk for hours, but once he became a caregiver he could not be far from his father so he essentially stopped this activity. I suggested that he could use a shorter route, for example, just going around the block more times. It was like a light bulb went off for him. It was simple, but sometimes caregivers are stressed and need help problem-solving. This intervention is about finding ways to fit PA into the context of caregiving. With an individualized approach, the family caregivers in this study were able to increase their amount of PA and the rate of adherence to the individualized PA plans was greater than 80%, which is very good.
Q: One of the things that prevent family caregivers from exercising, aside from logistical issues such as lack of time, is guilt. How can a healthcare provider use a simple intervention like this and get the message across to the caregiver that it’s okay to do this?
A: Yes, family caregivers often feel guilty about taking time for themselves. If there is post doc work after this, I am interested in not only how the healthcare provider can give encouragement and permission to caregivers to reduce their guilt, but also the interpersonal influence of the patient on the caregiver engagement in self-care activities. There may be room for some education and an intervention involving empathic communication there to promote family caregivers’ engagement in self-care.
Q: Will there be some kind of material provided to guide delivery?
A: I am working on an intervention guide, a booklet to outline exactly that ─ the content, structure, and process of the PA intervention and the details of how it can be delivered. What I am doing is exploring a way to help family caregivers develop an individually tailored plan that works for them, aiming to at least maintain their PA, but hopefully increasing it a little. The intervention guide will outline how this can be done.
Q: Looking ahead, is a RCT part of the research plan?
A: This is a novel intervention and our research to date shows that it is acceptable to family caregivers. The feasibility of an RCT also shows promise, but we need to finish analyzing the pilot data. We will need to pay attention to certain things that have come up in the pilot such as how to deal with data from bereaved family caregivers, attrition in the control group due to the caregivers’ desire to receive the intervention, and so on. So, we may need to consider an alternative research design for the larger study.
Q: What have you learned from this process?
A: I have learned you need to be mindful even if your mind is full. When you are doing a pilot study you are focused on the pilot objectives while constantly being mindful of the full study and the overall aim. You are also continuously balancing and negotiating the rigor of research with the pragmatic nuances of what is happening for family caregivers in the real world.
I have also gained a renewed appreciation for the importance of qualitative data. There were a lot of really valuable things that we could have only learned through the qualitative data − for instance, the reasons the caregivers dropped out of the study, the possibility that perhaps there are more meaningful outcomes that we should be looking at, as well as insights into the factors that are influencing adherence and how we might tap into that as we develop and deliver the intervention.
Q: Has having the opportunity to discuss your research during Research Rounds been helpful?
A: Yes! It is always helpful to be able to “talk out” your research with an interdisciplinary group of people outside the project. Different clinical and research backgrounds enrich the discussion, and all of these different perspectives challenge me and help to grow my thinking.
Q: What has the experience been like to be at McGill with this research team?
A: I am from Western Canada so when I was looking for a place to do my PhD, it was important to gain experience from another institution and perspective. I was looking for a program where I would get intensive research training and have opportunities to broaden my professional network and engage in interdisciplinary collaborations, particularly in the realm of family caregiver research. McGill has a great reputation and Dr. Robin Cohen has an established program of research in family caregiving, which is hard to find, so it was a good fit. I have established a wonderful network of colleagues and have had the opportunity to be part of some exciting ideas and collaborative projects aside from my own doctoral work.