Summary of #CSSMchat hosted by Emily Wolfe Phillips on July 31st 2019. “How are cancer caregivers managing their own health needs and what can we do to better support them?”

For July’s chat we were delighted to have Emily Wolfe Phillips hosting. Emily is a PhD student from the University of Ottawa focusing her studies on health behaviours among cancer caregivers. Emily has kindly written a summary of her #CSSMchat below.

“T1: How has caregiving had an impact on your life (as a caregiver yourself or as a cancer survivor, researcher, or healthcare provider working with caregivers)?”

Several participants who have been caregivers and who are now cancer survivors expressed a better understanding of the demands of caregivers as well as a unique perspective within the healthcare system. This was highlighted by @megsnuggets “A1: As a caregiver and a cancer survivor I have a whole new appreciation for the dedication and love it takes” and by @ViolentKuchar “T1: as someone who was chronologically a caregiver first and a patient second, caregiving provided me with more realistic expectations about navigating the healthcare system. For example, I wasn’t mad when my appts took hours longer than expected.”

Researchers and clinicians also shared their perspectives on the impact of caregiving. @DrClaireC expressed the dedication, energy, and compassion she sees in caregivers “A1: Wow, I’m finding this hard to put into words! I’m a provider, and I often work with caregivers. Every day I’m impressed by the dedication, energy, and compassion that they bring to the table. I just wish that we had more services/support for caregivers!”

T2: What self-care strategies do you use if you’re a caregiver, or would you recommend to a caregiver in your life, professional practice, or research to promote caregivers’ own physical, mental, and social health and wellbeing?

T2a: Do you or any caregivers in your life, professional practice, or research use health behaviours like physical activity, healthy eating, or getting adequate sleep as a form of self-care?

Caregivers, survivors, clinicians, and researchers identified a wide range of strategies such as self-compassion, maintaining social interaction and support, mindfulness, eating well, and being active to help maintain caregivers’ own health and wellbeing:

“A2: Ask for help and continue doing the things you were doing before you entered the role as a caregiver. Keep doing activities and maintaining a social life. Remember to love yourself and be kind to yourself. And never forget to always put yourself first” @megsnuggets

“A2: Some evidence to support self care strategies such as self-compassion, relaxation and meditation, eating well, trying to get some physical activity (just taking a walk if you can), getting enough sleep and trying to stay connected socially.” @jjonestoronto

“I keep trying different things to see what helps me most as I would guess everyone is different . Mindfulness, calm app, breathe+ app, acupuncture, naturopath, biofeedback, music, yin yoga. The thought of not being alive to care for my daughter motivates.” @tat_fet

“A2a: I talk to patients and caregivers a lot about the HALT principle! When you’re feeling distressed, check to see if you’re Hungry, Angry, Lonely, or Tired. It seems simple, but when these basic needs are not met, it’s WAY harder to deal with stressful situations.” @DrClaireC

“A2 – Remember what they tell you on an airplane. Put your air mask on first before helping someone else. The same holds true for being a caregiver. If your reserves are empty, you can’t help someone else.” @SYusishen

Despite many positive strategies, difficulties making time for these strategies were expressed:

“A2: I know a lot of caregivers who will – understandably – put off their own medical care to prioritize the patient’s care. Finding/taking the time for medical/dental/vision appointments can be challenging, but is also super important for caregiver health!” @DrClaireC

“A2a: It can be so hard to find the time for these self care activities but they help!” @jjonestoronto

It is also important to note that there is no “one size fits all” solutions for caregivers, as highlighted by @DrClaireC, “These are all such great self-care strategies! I also think it’s important to have a variety – not all strategies will be helpful for every time/situation/stressor. It’s just like having all different kinds of tools in your toolbox, right?”

T3: Are there any resources, programs, or support groups in your community that help caregivers engage in self-care and promote their own health?

Several resources identified are presented below:

“A3: The 4th Angel program ((link: http://4thangel.org/) 4thangel.org) does peer mentoring over the phone – much of their services are patient-oriented, but I do think they also provide peer mentors for caregivers!” @DrClaireC

“T3: this is a link to a good resource for people living in Toronto (GTA) from Princess Margaret (link: https://t.co/Vwfl548QKW?amp=1)” @jjonestoronto

“#CSSMchat The Cancer Support Community in the US also has some caregiver resources and support groups (link: https://www.cancersupportcommunity.org/caregivers) cancersupportcommunity.org/caregivers” @jjonestoronto

“I found this recently and it seems like a great thing to for healthcare providers to be consistent on to help implement to try and standardize the psychosocial needs which arise for both patients and caregivers/families. (link: https://www.mattiemiracle.com/standards) mattiemiracle.com/standards” @tat_fet

“A3: @colontown provides online support communities for colorectal cancer caregivers & patients. They have groups where we all talk, and separate safe spaces for only caregivers & only patients. #CCSMchat #crcsm” @ViolentKuchar

Overall, it was expressed that although resources do exist, they remain difficult to identify and access:

 “A3 – There are resources, but they are difficult to find, especially when the focus is on the patient. Many people don’t realize that psychosocial oncology is for both the patient and their family and friends.” @SYusishen

“A3 #CSSMchat not really that I’m aware of. I’m aware of an online tool for some free counseling sessions, and some charities have a few parent nights annually but that’s all I know about.” @FrugalPharm

T4: What do you think healthcare providers, community organizations, and/or researchers can do to better support caregivers?

Suggestions to better support caregivers included better integrating caregiver support and distress screening where the care recipients are being treated, more awareness and recognition of caregivers by healthcare providers, and more tangible support.

“A4 – Include the caregiver’s wellness check along with the cancer patient. Ensure they are aware of how important it is to take care of themself, and not let cancer and caregiving take over their life.” @SYusishen

“A4 #CSSMchat. I addressed this a bit in another answer: medical support where caregivers are at. Perhaps (not just 10 minute in the chair) massage services after months of sleeping on chairs or benches? And another pet peeve: more monetary support, less feel good branded “swag”” @FrugalPharm

“#CSSMchat for providers, I think being more proactive in addressing how caregivers are caring for themselves, especially if they voice a concern or frustration! And, I would love to see more remote work options… be it “subsidized” work through charities- even stuffing envelopes” @FrugalPharm

“A4: Some providers are better at this than others, but remember to ask how the caregivers are doing, too. It breaks my heart when I ask a caregiver how they’re holding up, and they say “no one else has asked me that” 💔” @DrClaireC

“I think a lot of cancer centers have patients complete a distress thermometer/checklist at their visits – it lets the team know if there’s issues to check in about. Why not just have the caregivers fill one out too?” @DrClaireC

Conclusion

The chat began with participants introducing themselves and discussing how caregiving has had an impact on their lives (topic 1). Participants highlighted challenging aspects of caregiving such as navigating the healthcare system, discussed caregiving from both a cancer survivor perspective and from a caregiver perspective, and providers working with caregivers shared their experiences. Next, self-care strategies to promote caregivers’ health were discussed (topic 2). Strategies such as self-compassion, social support, mindfulness, eating well, and being physically active were identified as helpful; however, caregivers face challenges with implementing these strategies. Participants then discussed resources to help caregivers (topic 3), though some participants were not aware of where to access support and the consensus was that such resources are not easily accessible. Last, participants suggested ways that healthcare providers, community organizations, or researchers can better help caregivers (topic 4). Going forward, caregivers may benefit from better acknowledgement of their role, more check-ins and/or distress screening, services in locations convenient to caregivers (i.e., where care is already being provided to the cancer survivor), and more monetary support. Going forward, it is essential to make sure caregivers’ experiences and preferences are being heard by co-designing resources to make caregivers’ mental and physical wellbeing a priority.

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