“Has Anyone Been There Now?”: An Interview Study on the Support Experiences and Unmet Needs of Informal Long-Distance Caregivers for Patients at the End of Life

Support for and from Other LD Caregivers and Family Members

LD caregivers described that they shared tasks with local and other LD family caregivers in accordance with each caregiver’s personal situation (e.g., their professional/personal commitments) and provided support for one another. One LD caregiving adult son and his local caregiving brother had divided up tasks: “We then divided it up a bit more so that we [LD caregiver and his wife] do all the bureaucratic work, because it doesn’t have to take place on site, does it? That is, because it is just as easy to do it remotely. That means submitting invoices to the health insurance company, applying for subsidies, all that stuff, that’s what we do. And my brother does more on-site care” (LDC15). Another LD caregiver explained that she coordinated other family caregivers’ support from a distance: “My part was actually that everyone—from my nephew on down to my sister—called me and said, ‘What can we do and what do we have to do now?’” (LDC9). Furthermore, an LD caregiving niece described the advisory role she took towards her local caregiving cousin: “I give my cousin some advice. (…) We talk on the phone every day or every two days, she writes to me in between, and I notice her desperation” (LDC8). LD caregivers also described that they received support from their own family members (e.g., in the form of car rides to and from the patient). In our study, we asked about employment status and were able to make links with experiences of support; for example, one student drew strength from being with fellow students at her university who were not involved in her father’s care situation: “When I’m in city A [place of study] and, I don’t know, surrounded by people who actually have nothing to do with the situation, it’s really good” (LDC16). Some LD caregivers also tried to provide relief to other (local) caregivers. For instance, one LD caregiver reported going for walks with his highly involved caregiving mother.

Satisfaction with the Support Received from Local and Other LD Caregivers

LD caregivers claimed that they relied on local caregivers (e.g., the patient’s relatives, friends, and neighbors) for support (see Table 1 for the number of other existing local caregivers). As one LD caregiver described: “My mother had a very large circle of friends (…) and a neighbor who always watched. Otherwise it wouldn’t have been possible in the last 2 or 3 years. So she still lived alone in the house. (…) That was (…) at all (only) possible (…), because (…) three keys were distributed and everyone always looked after her and with shopping (…) and also sometimes drove (her) to doctors or something. So there was a lot of support, which for me above all was simply (…) a great relief” (LDC5). Local caregivers were reported to shop, clean, and cook, and to check on the patient when the LD caregiver could not reach them by telephone. Some LD caregivers reported that the presence and availability of local caregivers allowed them to maintain the long-distance care situation. As one LD caregiver said about his local caregiving brother: “If my brother (…) was not there and would cushion a lot of things, (…) and I would have to care for my mother completely from a distance (…), then that would be (…) a very stressful experience for me” (LDC15).

LD caregivers reported close information exchange with local caregivers as helpful and relieving, because it allowed them to gather information about the patient. When such exchange was not present (i.e., when LD caregivers received only little information from local caregivers about the caregiving situation or when it was unclear whether or what caregiving responsibilities local caregivers had assumed), LD caregivers expressed dissatisfaction and emotional distress. One LD caregiver described: “In the beginning, I also called the nursing service frequently, because I said my brother has to coordinate that [home care]. He supposedly did that. But I don’t get much information or feedback from my brother. But I also have (…) little desire (…) to call him (…) and to always ask him” (LDC4). Furthermore, LD caregivers reported that conflict with local caregivers could arise when they did not engage in caregiving to the extent that the LD caregiver hoped: “She [LD caregiver’s mother] is sitting alone at home in her big, big apartment. For me, that’s shocking (…). My brother comes by for 5 minutes once a day. (…) My niece lives directly across the street—that is, my brother’s daughter—with her family (…). They don’t go there. They just have to go downstairs and say, ‘Hi, Grandma, how are you today? Can I buy you something? Would you like to have a coffee?’ Five minutes of talking. They don’t do that” (LDC4).

Some LD caregivers felt pressure from local caregivers to become more involved in local caregiving tasks and to facilitate the patient’s home care: “The neighbors are very demanding. They would like to have 24-h care (…). They actually keep calling me: ‘You have to, you have to, you have to take care. You have to. And you can’t do any of that.’ That the neighbors feel very involved is actually much more stressful than the actual [caregiving] situation. (…) I offered him [patient, who is LD caregiver’s father] to go to the nursing home. He doesn’t want to go there and the neighbors don’t want that either: (…) ‘You can’t take away [patient’s first name].’ (…) The community without him (…) is no longer the community as it used to be” (LDC6).

Satisfaction with Received Professional and Voluntary Support

LD caregivers appreciated when health professionals and volunteers were available by telephone to provide detailed information about the patient’s disease and care situation: “The strong moments that there were with the last facility were really also telephone calls, for example, with the (…) manager of (…) this nursing home (…) where we exchanged information about my father’s condition, where the director explained to me what was happening (…) in my father’s head with this non-oncological disease A (…), where a (…) change of perspective was made (…) into my father’s situation, where we also considered together what was important for him now” (LDC11). LD caregivers described a shortage of nursing staff, and they further acknowledged that the medical doctors and nurses they communicated with were under tremendous time pressure, which limited the extent to which they could engage in discussion. Nonetheless, one LD caregiver reported a positive conversation experience: “When I then had a doctor on the line, it was also a good, (…) open conversation. (…) ‘Do you have another question?’ So it wasn’t just somehow so chop chop and quite awful” (LDC5).

Due to the distance, which prevented LD caregivers from closely monitoring the caretaking situation, LD caregivers felt relief when they knew that their relative was receiving comprehensive care in the form of regular meals and opportunities for conversation: “You have a structure, that someone is really there around the clock, that there is a regular meal, (…) that she drinks enough and things like that, which you can’t control and manage from a distance. (…) After these 3 years, (…) in which she lived at home and it became worse and worse, it became increasingly strenuous, it became much easier all at once when my mother moved into this assisted living facility A, because there the care is much more comprehensive (…)” (LDC15). For some LD caregivers, volunteers served as a bridge to the patient: “I am very happy that I have now found a volunteer from the hospice association through doctor [last name A], who will then also visit my mother regularly and with whom I can be in contact. (…) We have already exchanged emails. She briefly told me that she was with my mother again, that they talked a lot about dogs and European country A [patient and LDC15’s country of birth and LDC15’s country of residence]. And then I wrote to her ‘Great, with dogs and animals in general you have the topic at all with my mother’” (LDC12). Almost a fifth (17.6%) of the LD caregivers’ in our study were sole caregivers (see Table 1). The interviews revealed that they were particularly dependent on the support of volunteers, as the following quote illustrates: “[a] volunteer who (…) reads to my mum. (…) I would have wished that the nursing home had made me aware of this much earlier. I didn’t know that she (the care recipient) had no contact at all” (LDC17).

Desire for More Exchange with Family, Friends and Other LD Caregivers

LD caregivers with conflicting relationships with local caregivers complained that they were not well informed about the caregiving activities: “I still have a brother who lives near city A [that is place of care recipient’s residency], who also does a bit, but unfortunately we have also completely quarreled in this stressful situation, so that is also still super difficult. So he doesn’t communicate with me at all now. That means I don’t really know what he’s doing. He really wanted to take over the finances, but I don’t know to what extent he has done that” (LDC3). Desire for more exchange with local family caregivers was also expressed: “So actually at that time with this life partner [of the patient], it was so that it was then too much for him, and he then withdrew at some point, and that made me so completely crazy. I really would have liked to have someone else by my side who were a bit more reflective or closer to me” (LDC10).

Finally, LD caregivers voiced a desire to exchange ideas with other LD caregivers: “[I] would (…) try to find someone who was in exactly the same situation to see: What did they do that helped? (…) For me, for example, [there are] different systems with the countries. You have to start really early to understand how it works and to get support and get support as early as possible, so that you have an insight: What do I have to do to (…) make it in six months and not begin in six months (…) because that’s when we need it. Bureaucracy is very, very slow. (…) I didn’t know how slow it is and how early you have to start” (LDC2).

Desire for More Contact with Care Facilities

LD caregivers expressed a desire to be considered more proactively in their specific LD caregiving situation by professional caregivers, and to be actively considered as informal caregiving family members. In this vein, one LD caregiving daughter suggested that a short questionnaire could be helpful for capturing the unique challenges faced by LD caregivers: “It would be important to have something like a short questionnaire or just a short conversation, no matter who is doing it—so whether it’s a social worker or a doctor or a nurse, that you ask once briefly ‘How did you get here? Are you staying the night? Are you going to leave in time?’ Maybe even ‘Do you need an attestation for the employer somehow?’ So something like that, that you just say, ‘How do you do it?’ or something. For example (…) the question was also ‘Can you go there by train?’ And we found out that this is not possible at all. Technically, you can’t get there by train at all. That means, if you didn’t have a car, it wouldn’t have been possible at all. (…) And these were all things (…) if you were to briefly query them.” (LDC11).

Desire was also expressed for a family discussion to agree on the appropriate contact persons for specific matters, with professional caregivers brought into the discussion, as appropriate. Several LD caregivers also expressed a need for personal contact and emotional support from care-providing facilities: “Of course, it is easier to discuss any laboratory results or CT results than to ask questions like ‘How are you doing?’ (…) That is also something that (…) [I] really missed a lot” (LDC11).

One LD caregiver expressed interest in an app that would allow caregivers to record information about the patient’s health status and the care that had been provided: “That I can also be really sure that there was someone there who took care of her. Was someone there now? Did someone come? (…) At our kindergarten, there was an app for a while, where (…) you were simply clicked on somehow, ‘Child has just been given lunch.’ (…) Simply knowing that this and this service took place is done, so that you don’t have to worry in the sense of ‘Has anyone been there now?’” (LDC1).

LD caregivers also expressed desire for an online appointment booking function for telephone consultations and a fixed contact person at the care-providing facility.

LD Caregiver Perspectives on Advisable Support

LD caregivers recommended that tasks be agreed upon, shared, and coordinated between local and LD caregivers. In particular, they felt that mutual support between LD and local caregivers was beneficial for both the caregiving situation and the caregiving experience: “So we are a relatively manageable [laughs] family. Fortunately, my sister and I are still the closest relatives. And my sister and I are very well coordinated and have similar ideas. In that respect, it works very, very well between us—fortunately” (LDC13). Some LD caregivers described that, due to the disease situation, the patient had lost social contact on site. Thus, more social contact—perhaps in the form of a local care network—could be beneficial for the patient, thereby easing the burden placed on LD caregivers. In addition, LD caregivers recognized the benefit of accepting that some things could not be influenced over a geographical distance. They therefore emphasized the importance of informing employers and colleagues about the LD caregiving situation, expressing that dealing openly with the LD caregiving situation could positively influence the overall caregiving experience. One LD caregiving son said about his colleagues: “I really had extremely good support from my colleagues, who picked up the slack. I have never experienced anyone saying, ‘Oh, (…) he’s not here again in the afternoon’, because (…) during the week (…) I sometimes left my workplace A every other day at 2:00 or 3:30 (…)” (LDC15). Another LD caregiver reported: “I know that I’m in a fortunate situation (…) that my employer is very, very social at this point (…) and when I say ‘Hey, the situation is like this now’ and then they say ‘No problem, we’ll work it out, take a vacation’” (LDC7).