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Personal Pressures

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It is not surprising that the weight of responsibility that distance family members feel towards their home life is both a significant consideration and a barrier to visiting their loved one in person.

Distance Family Members described numerous concerns about how to maintain their lives at home, which often included coordinating schedules with a spouse or partner, childcare issues, arranging for care of pets and animals, as well as commitments at work and managing their own health and wellness.

Juggling Childcare and Elder Care
The issue of elder care competing for time and attention with raising children is a characteristic known as the “sandwich generation” defined by adults attempting to fulfill both childcare needs and the care of their aging parents (Arnup, 2013), often while maintaining full-time employment. The very tactical requirements associated with reorganizing family schedules, including drop-offs and pickups from school or daycare, are a by-product of
an increasingly busy modern family life.

“I’ve got a seven year old and an 11 year old and my husband works a lot of hours, sometimes he’ll work 50–60 hours a week. So, I’m in charge of picking the kids up and dropping them off…I’m lucky, I have my mother-in-law who lives 5 minutes away…but the problem is she has MS so she can’t drop the kids off…I was able to drop the kids off [there] but my husband had to rearrange his day and then he would work late, so I would get the kids and I’d get home late…it was a real juggling act.” — Distance Family Member

Work Pressures
The prominence of work, and the need to keep employment sustainable, can be aligned to the financial stresses caused by frequent travel over an extended period of time, as well as maintaining work to uphold the financial responsibilities needed to support day-to-day family life. The timeframes associated with the illness trajectories for those interviewed, ranged from two years to six-plus years. With many Distance Family Members making multiple trips over the course of a year, the expense of travel can become significant.

Despite the supportive nature of most employee/employer relationships—and for some, work was seen as a way to stay connected to their “home reality”—it presented a barrier to spending more time with loved ones. As one Distance Family Member acknowledged, despite the two hour drive, “…I was unemployed during my mothers stay in hospital, I was there almost every day, all day. My sisters are still working and could not be there as often.”

Many Distance Family Members created routines for upkeep of work responsibilities while they were away. This helped to normalize their schedules, both at home and at work.

“It’s a four hour flight with two planes, I would be there for three weeks and here for 2 weeks…they allowed me to work there…my schedule was work in the morning then have lunch with mom, spend the afternoon and then go back until 8 o’clock and from 8 o’clock until midnight I would work again.” — Distance Family Member

This juxtaposition of keeping up the home life and the desire to be supportive of their loved one created an ongoing weighing of outcomes, based on which needs were greater at any given moment. Regardless of the decision, Distance Family Members expressed increased stress and anxiety over the conflicting demands.

“It was extremely stressful. I wanted to be with her 24/7, but I had other life pressures that I had no choice but to deal with. I constantly felt I was not spending enough time there.”
— Distance Family Member

Emotional Toll
Emotional burdens—specifically guilt, shame and helplessness—were shared often by Distance Family Members. The challenge of balancing life at home and spending time with their loved one often resulted in Distance Family Members wishing they were able to spend more time; many felt they weren’t there enough and either lost time or missed a lot of the good days.

“There was just this feeling of hopelessness…or helplessness I should say, because I couldn’t be there the way that I wanted to be there…and I guess a bit of guilt. I could see that my mom was in severe distress and I did my best to support her. But, you can only do so much when it’s a four hour round trip and it’s the dead of winter. It was really tough.” — Distance Family Member

It is perhaps this later sense of helplessness—intersecting with the limitations created by distance—that resulted in feelings of guilt. A number of Distance Family Members spoke of feeling “a daughter’s guilt” because they were not able to be with their loved one as often as they would have liked, or thought they should have been.

DESIGN IMPLICATIONS
Distance Family Members have multiple pressures, including family life, childcare and work, that can restrict how much time they are able to travel to visit a loved one. Emotional consequences are common and need to be acknowledged.

The responsibilities of home are a critical context for understanding the Distance Family Member. When dealing with the expected death of a loved one, feelings of stress, guilt, anxiety and helplessness are some of the costs of being at a distance—the result of having to balance two lives: their own lives at home and the responsibility they feel towards their loved one who is nearing end-of-life. It is a difficult situation, as the Distance Family Member is always trading one for the other; always sacrificing one for the other.

For practitioners, this is an important consideration, as any interaction with the Distance Family Member will likely be clouded by this context and the emotions that are attached to the conflict. It is also important for families, including the Distance Family Member, to be aware of this context, since it can affect interactions with the patient and caregiver. As such, it will be important for design interventions to provide mechanisms that ideally de-escalate the high-stress feelings that Distance Family Members can bring with them when they visit in person.

As well, identifying options to bridge the distance, other than travel, should be considered. If it is possible to support the Distance Family Member’s ability to feel connected to their loved one throughout the decline of their illness, then there is the potential to mitigate stress and decrease the prominence of feelings of guilt and helplessness.



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