What Caregiving Employees Really Need From Work Through Serious Illness

“They gave me the opportunity to restructure my workload when I felt tired and this made sure that I had the back-up of the other employees who could offer to help me during emergencies. They also ensured that I had time that I required during medical appointments without the worry of time limits.”

“….They allowed me to adjust my working hours as I needed to take my treatments and to be absent if need be. They also allowed my co-workers to celebrate with me by providing dishes for a luncheon every three weeks after completing chemo treatment.”

Self-sacrifice for mothers is so ingrained in culture, it doesn’t surprise anyone when we abandon self-care. Childcare, household and paid work are so consuming, there’s very little discretionary time and many feel too guilty to use it on wellbeing. But what happens when self-care can’t be aspirational because it’s essential for your near-term survival?

Serious Illness Touches Most Families

Millions of people raise kids or care for seniors, while navigating serious illnesses. Cancer rates among people under 50 continue to rise and according to the World Health Organization, “1 in 5 people are diagnosed with cancer in their lifetime. Nearly every family around the world is eventually touched by cancer, either directly as a patient or as a caregiver.”

Caregivers Often Prioritize Career Over Self-Care

Countless studies highlight what most people see in their families and communities. Self-care for caregivers, to children or adults is fragile, especially for caregiving women. In our post pandemic research, 79% cite doing “terribly” or “not as well as usual” at self-care. Those activities at the top of the Mom’s Hierarchy of Needs, like sleep, movement, stress management, and nutrition.

In our latest research study, in partnership with Emmanuel College we asked over 200 parents and family caregivers with cancer — mostly women (73%) in the paid workforce – what they needed most from employers for their wellbeing. Perhaps not surprisingly, vague promises aren’t sufficient in this situation. All caregiving workers need policies, benefits and practices that are conducive to care. However with a cancer diagnosis, it’s imperative for employers to offer tangible forms of relief.

Self-Care is Already Challenging for Caregivers

Self-care routines are fragile for most people. Parenting or caring for adults, however adds new constraints, typically on our time. And then, for women in most families the gendered divide in household, childcare and mental energy to plan it fragments the calendar further.

Few in this study (13%) cite doing a “great job” as caregivers to themselves. Although most did not feel they were giving “great” care to others either, overall, they rated themselves higher in those categories. Whether caring for children or adults, 24.7% and 17.5% respectively.

Employers Can Offer Meaningful Flexibility

“My employer showed commitment by allowing flexible scheduling and remote work during treatment periods. They also encouraged me to prioritize medical appointments and recovery without penalty.”

Most who worked for an employer, versus entrepreneurs or those looking for work, experienced multiple forms of support. But flexibility was cited the most often (41%) in the open-ended questions. Especially when the employee had agency and control over which options were the most helpful. Or their employer proactively offered a menu of choices.

Ideally, Co-Created or Led by Employees

“My direct boss cut down the amount of work she assigned me while I was going through active treatment. She pretty much let me dictate how much work to take on, knowing that I would do as much as I actually could and would not take advantage.”

Flexibility is never “one size fits all” because roles are different, as are people. For most parents, having some control over how, where and when the work gets done, is important. However, through a cancer diagnosis this type of flexibility can make the difference in whether someone stays employed, adheres to their treatments and feels optimistic through the process.

Keep Communication Open and Frequent

Not everyone had the same treatments, health or energy levels when they were either on leave or returning to work. Specific forms of flexibility cited the most often included: shifted hours, the ability to set their own hours, work from home, work shorter schedules, leave for appointments whenever needed. However, some also cited “lighter duty” (when working in physical roles) and “easier workload” or “relaxed deadlines.”

Create Special PTO Policies For Serious Illness

“Although I did not take a significant amount of time off of work, I still had to have my doctor put me on fmla. My work has this ridiculous policy that if you use “too much” sick time, they take away your ability to work remotely, regardless of why you used the sick time.”

Most of our respondents to date, received the flexibility and support, they needed. Including benefits and paid time off. Some organizations tried to make typical sick leave policies fit. Despite how different the experience and duration of managing cancer treatments and recovery is, from other types of illnesses. Employers need policies to address and differentiate support for this scenario.

Keep Employees Financially Whole

“My medical insurance was robust, with very small copays for office visits. Lab work and hospital stays were fully paid. I was able to take a full day off if I needed it. Though being in the US, I only had about 7 days paid off per year.”

“FULL PAY SICK LEAVE FOR OVER 6 MONTHS, CHANGE OF DUTIES, CHECK INS, HOME VISIT, SPACE, EMPATHY, CARE.”

Facing a serious illness is stressful enough. So, when employees didn’t lose compensation, they shared it either “demonstrated commitment to their wellbeing” or was “helpful” for their recovery.

By contrast, when employers didn’t provide adequate financial coverage, caregiving employees noticed. One shared, “internal pressure meant I worked when really, I should have taken time out. Working during chemo was daft in retrospect. (Due to) financial pressures… I might be feeling better now if I had taken the proper time out.”

Express Compassion and Empathy

“My employer provided a meal train with food and gift cards. It was very helpful to have people checking on me.”

“They were supportive when I was going through treatment for skin cancer and made it easy to attend medical appointments without pressure. My supervisor checked in occasionally and encouraged me to focus on getting better rather than worrying about work. That kind of understanding meant a lot during that time.”

The goodwill received from employers (and colleagues) was typically described using the same language one might use about a good friend. For example, expressing and demonstrating concern, compassion, empathy and understanding. This includes: visiting employees at the hospital or in their homes, scheduling frequent check ins, letting the employee take the lead on how much felt like ‘too much’ or too little, providing post-chemo celebrations, meal trains and transportation to and from treatments.

Parents, and family caregivers pour a huge amount of time, energy and expertise into their work. Many expect reciprocity and kindness when faced with a life-threatening diagnosis. Those who didn’t felt hurt, disillusioned or angry. As one respondent shared, “(they) begrudged letting me have time off. Made me feel guilty… it was awful when I was in recovery.”

Take Values-Aligned Action

In the US, employers are both the purveyors of health insurance and conditions under which people work. So, they have outsized power to improve mental health and ease the strain when navigating illness. Financially, logistically and emotionally, when workers suffer from serious illness and need to engage self care and treatment protocols.

Leaders can demonstrate their values at every juncture in the professional experience. Including when people are at their most vulnerable and need thoughtful interventions combined with emotional support.

Stay tuned, this is the first in our series from the Caregivers with Cancer study. If you’ve been a cancer patient while caring for others, please lend your voice to this research study!

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