The original eligibility criterion for distance was 300 miles or more, consistent with the NCOA (1997)
survey. However, patients in the current study often identified the distance caregiver as the child who was perceived to live a long distance away, regardless of actual mileage. The eligibility criterion was changed midenrollment to those who lived at least 100 miles away to capture those who were identified as distance caregivers by their parents. Five themes evolved from the interviews.
Theme 1: Benefits and Burdens
Participants described the positive and negative aspects of distance caregiving but were quick to report the negative aspects of distance. They reported feeling guilty, helpless, and stressed because they lived so far away, and one participant described the experience as “frustrating, exhausting, and stressful.”
Many reported that not being able to get home quickly was very difficult. For example, one caregiver stated, “It’s scary to be this far away; if I needed to get home right away, if anything were to happen and there was bad weather … that part is kinda stressful.” Travel time was a clear source of worry. One distance caregiver noted, “It takes me three and a half to four hours to get there, so I can’t be there immediately in a crisis.” Another participant said “[In] an emergency, I can’t just hop on a plane to help her right away; it would take some time and that’s a concern.”
On the other hand, many participants identified positive aspects of being a distance caregiver. One participant stated that “the family … I think it’s brought us even closer now.” Some reported that frequent phone conversations had strengthened their relationship with their parent. For example, one participant stated, “It’s nice because I think she might say things to me she wouldn’t say if I were closer … so that part is a mixed blessing.” Another caregiver indicated that not having to see how her mom was doing and not having to face the cancer every day were beneficial: “I think it’d be harder if I was around her every day when she went to treatments.” For some, being far away was seen as burdensome; for others, the distance protected them from the cancer experience.
Theme 2: Struggling With Uncertainty
Most participants talked about dealing with uncertainty. Some reported uncertainty regarding when to visit, especially after treatment. For example, one son spoke about not knowing which treatment, surgery, or chemotherapy would be the most difficult for his mother. He stated, “We didn’t know if we needed to come down right away versus waiting ‘til later.” He waited to visit when she started chemotherapy, thinking she would need him more then; however, he found that she had more difficulty with surgery and wished he had gone at that time instead. Others noted they did not know when to call to check in, because they did not know what was happening at home. For example, one caregiver said, “It’s hard being away and hard to know when you should call … if she’s sleeping.”
Like local caregivers, many distance caregivers talked about the uncertainty of the cancer prognosis and disease trajectory. One daughter said she needed to know what the outcome was going to be: “Why is she going through all this if it’s not gonna work? I would like a finite answer, is it working or isn’t it … it’s just not knowing.” However, the uncertainty associated with cancer prognosis and disease trajectory is compounded by distance. Many participants spoke about the uncertainty of not knowing how the parent really is doing. One son said, “I don’t know exactly what’s going on with my dad and how he actually physically is doing.” Another stated, “It’s just very stressful because you can’t be there; you can’t evaluate him.” Many participants wished that they could see what was happening firsthand; the distance made that impossible.
Theme 3: Direct Action Through Information Seeking
All participants wanted more information. They wanted to know more about the disease, treatments, and what their parents actually were experiencing. One participant was frustrated with having to rely on her mother and father to give her second-hand information: “I would like more information … we don’t truly understand it … I’m not even sure my parents understand it, too, all the time.” Another stated a similar concern.
‘Cause of my mother’s age and because she has selective hearing, I don’t always get the truth… . It would be nice if someone would call me up—you know, in the medical field … so I know … it’s the not knowing that’s scary.
The participants also asked about resources and support groups available to them and to their parents. One son wanted a manual that had “the top cancer institutions and top nutritionists in the area, the emergency rooms, and the homecare nurses.” He had to research that for himself and did not know the geographic area. One daughter suggested a fact sheet.
Your dad’s been diagnosed with stage III colon cancer and this is what it means… . ‘Cause you know I go and look things up on the Internet and the Internet’s only as good as whatever the source is.
Others wished a support group existed for distance caregivers. The distance did limit the ability to receive information firsthand, which increased uncertainty. However, distance caregivers, like local caregivers, seemed to be seeking information that would reassure them that their loved one had a good prognosis.
Theme 4: Protecting
Similar to the experience of local caregivers, many distance caregivers talked about their parents’ need to protect them. Distance caregivers reported that their parents often withheld information so their adult children would not worry. One participant said about his mother, “Her personality is to constantly be concerned about other people; she is more worried about everybody else.” Another said when she asked her mother how she was doing, “She reverts to the mother role and doesn’t want me to worry.” One daughter said, “Living far away, they won’t tell me over the phone; they feel like they’re burdening me.”
The need to protect was reciprocal. Distance caregivers wanted to protect their parents from worrying about them, and on a larger scale, from worrying about the cancer or dying. One caregiver and his siblings wanted to hide any upsetting information, such as job worries or problems with the children, from their mother, and he said, “We were all concerned about her, not taxing her with other things that are going on.” Another emphasized the importance of not giving up hope: “It doesn’t matter what they tell you, even the doctors are guessing at what’s going to happen… . The last thing you wanna do is give the patient the feeling that you’re panicking… . They shouldn’t be worried about you.” Specific to distance caregivers, she went on to say, “We all have a tendency to want to fly in—fly in and fix things—and cancer doesn’t work that way.” In the clinical setting, distance caregivers often fly in for a visit, try to change the plan of care, and attempt to fix everything before they return home.
Theme 5: Staying Connected
The importance of connectedness was apparent from the responses to question 2: “If a friend or colleague came and told you tomorrow that his or her parent was just diagnosed with advanced cancer and lives far away, what advice would you give?” Like local caregivers, distance caregivers reported the importance of staying connected with the ill parent, being in contact with the healthcare team, and, for some, being personally connected to God. Participants stressed maintaining connections with their parents, particularly because of the geographic distance. Many made daily calls, and some spoke to their parents numerous times throughout the day. One daughter gave advice for others, saying, “Continue to keep contact, be it phone or whatever you can, to have that constant contact just to check in—and then not to let the distance come between conversations and communication.” Others suggested, “Just because you’re not physically there doesn’t mean that you can’t be there emotionally and, you know, be there to talk … if they need to.”
Many wanted more communication with the physicians and nurses. One caregiver said, “It’d be nice to have contact with someone in the medical field.” She went on to say that she wanted to be able to ask questions because she didn’t think her parents understood the information given to them. Another said,
I would have really liked it if in the beginning I could have talked with one of the nurses about the treatment that my dad was gonna be going through … and the prognosis and side effects … that would have probably put my mind at ease a little more.
Some wanted the opportunity to communicate with other distance caregivers who were going through the same experience for support and validation of feelings. One daughter said,
There really ought to be some sort of Web site or blog or something that we the family members could send messages—to say, this is how I’m feeling and what I’m getting from my mom—can somebody just tell me this is normal?
A few caregivers spoke about the importance of their connection with a church community and with God. When asked how he was dealing with the situation, one participant said, “First of all, I’m a faithful person, so I have faith in God.” Another participant said, “I can’t be there right now and that’s tough, but I’ve put everything in God’s hands… . You have to put your faith in God … without a church family, I don’t know that I could’ve made it through.”