Taking Care of the Care Partners
By Pamela Kline Munnelly, MBA
Director, Community Development – Health Union
Caregivers are a key component of patient-centered care, and, as such, their role in helping those with chronic conditions should not be overlooked. As outlined in a 2013 article from the Journal of the American Medical Association, patient-centered care is impossible without involvement from caregivers, and clinicians and others should pay more attention to the important role that caregivers play.
When thinking about the resources and the type of attention they need, it’s important to remember that care partners are not simply tools or a way to ensure better patient care. Consistent with the needs of those they care for, care partners – as people – also have needs including physical, emotional, mental and financial.
In addition to having the resources they need to provide better quality of life for their loved ones, it is also extremely important for care partners to be exposed to resources designed to help them through their own physical, mental and emotional health concerns.
The reality is that the enormous responsibility of caring for somebody with a chronic health condition can significantly affect a care partner’s personal life. We witness this daily via the conversations that happen within Health Union’s growing portfolio of chronic condition-specific online health communities.
These observations are reinforced by the findings of the company’s recent Impact of Cancer survey, which featured responses from current care partners of people living with cancer. In fact, six in 10 care partner respondents said they’ve had to make changes to their career or work life, including reducing the number of hours worked and even stopping work by choice, due to the patient’s cancer diagnosis or treatment. On top of that, nearly half said the patient’s cancer has had a negative impact on their own financial situation.
Care partners expend much energy worrying about the impact of chronic health conditions on the loved ones in their care. For example, about seven in 10 care partners said they felt both scared of what the future holds for the patients and helpless that they can’t do more for them.
All of this plus a bevy of other factors, including the amount of time spent managing treatments and medical appointments, can ultimately weigh on a care partner’s emotional well-being. More than a fifth of respondents said they consider themselves extremely depressed. Even more – 52% – said their life outlook has become more negative since the patient’s diagnosis, while nearly two-thirds are scared of what the future has in store for them as a care partner.
Despite a boost in awareness due to initiatives like National Family Caregivers Month, there should be a concerted effort year-round – by healthcare professionals, companies that provide treatments and nonprofit organizations – to provide care partners with the resources they need.
And, in addition to seeking resources from these groups and organizations, care partners should ensure they find adequate social support. This can be found through in-person support groups, social interactions and relationships or through online communities. Specifically, online health communities, including those that address specific chronic conditions, can be an effective means for social support because participants can receive support when they need it while finding relevant information and perspectives from both patients and caregivers.
With the help of resources that focus on improving and maintaining their quality of life, care partners can be better equipped to help patients in their health journeys while also living more holistically healthy lives themselves.