“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

Abstract

In the German context, research is lacking on the support experiences and unmet needs of informal caregivers in end-of-life situations who are geographically distanced from their ill relatives. The current study aimed at deepening our understanding of the specific end-of-life support experiences and needs of informal long-distance caregivers. The study employed an explorative design, applying qualitative interviews. Thirty-three long-distance family caregivers participated in the study (December 2021–October 2022). The results showed that long-distance caregivers relied on close exchange and cooperation with local family and non-kin caregivers. They also expressed the wish to be considered more proactively by professional caregivers, with respect to their specific geographic situations. They further recommended that local care networks be built to support patients. Hypotheses were deduced from long-distance caregivers’ recommendations for support interventions. The results may be useful for the development of an online information resource for long-distance caregivers in end-of-life situations.

Keywords

caregivers family hospice communication family caregivers palliative care end-of-life care long-distance caregiving psychosocial

Introduction

Most healthcare systems, including the German one, rely on informal caregivers. This is, for example, due to cuts in public services and a shortage of nursing staff. Informal caregivers play a vital role in supporting and caring for terminally ill patients. They may also enable patients to remain in their own homes until the end of their lives (Payne, 2012). In particular, long-distance (LD) family caregiving is becoming increasingly common, due to social changes such as urbanization and increased mobility on the labor market (Croucher et al., 2021), which have increased the number of family members living at a distance from their ill loved ones. Furthermore, individuals with a migration history, who currently make up 23.8% of the German population (Statistisches Bundesamt [Destatis], 2022), are very likely to have family living abroad, and the significant distance between them presents a challenge for regular personal contact.

In the literature, no consensus definition for LD caregiving exists (Herbst et al., 2022). Previous studies have based their definition on mileage (Koerin & Harrigan, 2003; Wagner, 1997), travelling time (Roff et al., 2007), or the inability to have daily face-to-face contact (Bledsoe et al., 2010). More recently, emphasis was placed on proclaimed self-identification as LD caregiver (Bevan & Sparks, 2011; Casañas i Comabella, 2017). All of these definitions share the idea that an LD caregiver is someone who is limited in their ability to visit due to not living nearby (Casañas i Comabella, 2017).

The existing literature suggests that LD caregiving for a terminally ill loved one is associated with barriers to care provision, as the distance can limit the extent to which caregivers are able to participate in care activities (Bravo, 2017; Cagle, 2008; Cagle & Kovacs, 2011; Casañas i Comabella, 2017; Mazanec, 2009; Stone et al., 2012; Zuo et al., 2014). Studies have shown that LD caregivers report communication difficulties, while emphasizing the importance of communication technologies (Baldassar et al., 2007; Battley et al., 2012; Bravo, 2017; Casañas i Comabella, 2017; Flanagan et al., 2014; Johnston et al., 2012; Jones, 2014; Mazanec et al., 2011; Musacchio, 2021; Starr et al., 2023; Stone et al., 2012). Burden is one of the most frequently addressed topics in research on LD caregiving at the end of life, and a particular emphasis is placed on caregiver experiences of stress, powerlessness, anger, fear, anxiety, despair, loss, and guilt (Ahmad, 2016; Bravo, 2017; Bruhn, 2016; Cagle, 2008; Casañas i Comabella, 2017; Flanagan et al., 2014; Mazanec, 2009, 2012; Mazanec et al., 2011; Musacchio, 2021; Stone et al., 2012). Furthermore, Casañas i Comabella (2017) reported on LD caregivers’ financial burden associated with telephone calls and international text messages, as well as accommodation costs while visiting the patient. This and a second study (Kimball, 2015) further addressed the requirement for LD caregivers to balance their job commitments and caregiving responsibilities.

Additionally, LD caregivers interact (sometimes conflictingly) with local caregivers (Baldassar et al., 2007; Bruhn, 2016; Cagle, 2008; Cagle & Kovacs, 2011; Casañas i Comabella, 2017; Kimball, 2015; Mazanec, 2009; Stone et al., 2012). In this vein, studies have shown that LD caregivers may experience frustration linked to feelings of being inadequately informed or involved by local caregivers (Baldassar et al., 2007), particularly with respect to decision-making (Stone et al., 2012). Several studies have also found that LD caregivers find it generally difficult to get in touch with local healthcare providers (Cagle, 2008; Casañas i Comabella, 2017; Mazanec, 2009).

Building on these findings, studies have investigated the specific wishes and support needs of LD caregivers of patients at the end of life (Cagle & Kovacs, 2011; Casañas i Comabella, 2017; Flanagan et al., 2014; Kimball, 2015; Mazanec, 2009; Mazanec et al., 2011). In particular, these studies have underlined LD caregivers’ information and communication needs pertaining to the progressive illness, the dying process, and the caregiving situation—also to better control the caregiving situation from a distance. One study (Casañas i Comabella, 2017) also emphasized LD caregivers’ desire for more continuous communication with patients via communication technologies. Finally, a number of studies have indicated LD caregivers’ wish for exchange with other LD caregivers via support groups (Kimball, 2015; Mazanec, 2009; Mazanec et al., 2011).

Although most studies in this area have focused on the barriers and burdens faced by LD caregivers, some have also identified positive aspects of LD caregiving. One such positive aspect is the buffer zone afforded by the distance, which enables LD caregivers to pursue leisure activities outside of their caregiving tasks (Ahmad, 2016; Cagle & Kovacs, 2011; Casañas i Comabella, 2017; Mazanec, 2009; Mazanec et al., 2011).

Notwithstanding these important findings, only six international studies (Cagle & Kovacs, 2011; Casañas i Comabella, 2017; Flanagan et al., 2014; Kimball, 2015; Mazanec, 2009; Mazanec et al., 2011), as identified within a topical scoping review (Ülgüt et al., 2023), have addressed the support experiences and needs of LD caregivers for relatives at the end of life. One of these studies investigated LD caregivers across different European countries (i.e., Austria, Belgium, Ireland, Switzerland, the United Kingdom; Casañas i Comabella, 2017) and two investigated LD caregivers based in particular regions of Europe (i.e., the United Kingdom; Casañas i Comabella, 2017; Flanagan et al., 2014). Thus, there is a research gap pertaining to the specific support experiences and unmet needs of LD caregivers of patients located in Germany. However, gaining a comprehensive understanding of LD caregivers’ experiences is critical to design support services according to LD caregivers’ needs. While certain services, such as support groups, educational programs, and caregiver’s allowance, exist internationally to improve the caregivers’ situation, current social policies inadequately address LD caregivers’ specific support needs, such as balancing distance care with work and family (Bei et al., 2023; Cahill et al., 2023).

Research Question

The present study aimed at deepening our understanding of the specific end-of-life support experiences and unmet needs of informal LD caregivers. By identifying LD caregivers’ conceptualizations of their personal situations, particularly with regard to their provision and receipt of support, the research aimed at gathering insights to guide the evidence-based development of recommendations for support interventions. The study was embedded in the larger research project LoCatE, which explores the specifics of LD caregiving at the end of life (Herbst et al., 2022). The term ‘caregiving’ in this study refers to both practical and emotional support (Hermanns & Mastel-Smith, 2012; Van der Geest, 2002).

Methods

Design

The study used a qualitative design and was guided by an inductive logic, drawing on one-time semi-structured interviews. Due to the limited evidence in the research (Herbst et al., 2022; Ülgüt et al., 2023), an explorative design was chosen. A semi-structured interview was applied to obtain information on the support experiences of LD caregivers and their desired levels of support. Quantitative questionnaires were used to collect socio-demographic details. An interpretive-constructivist approach to grounded theory was adopted to construct hypotheses from the interview data (Mertens, 2003; Mills et al., 2006).

Participants

LD caregivers were recruited between December 2021 and October 2022 from a single university hospital, via the associated palliative care unit, the palliative care unit of an academic teaching hospital, five hospices, three specialized palliative home care teams, one hospice home care service, two general practitioners, and public outreach on relevant Facebook groups, on the project Web site, and in relevant newsletters. Purposeful sampling was applied to include participants with heterogeneous characteristics, with regards to (e.g.) gender, age, immigrant background, employment status, and relationship to the patient. LD caregivers of living and deceased (<1 year prior to the data collection) patients aged ≥18 years, suffering from a malignant or non-malignant life-limiting chronic disease, were invited to participate in the study by the research team. LD caregivers had to be ≥18 years old and unable to maintain daily in-person contact with the patient due to geographical distance between their places of residence (Bledsoe et al., 2010), and they must perceive themselves as an LD caregiver. LD caregivers were included regardless of their primary/secondary caregiver status. LD caregivers whose mother tongue was not German were offered an interpreter. Eligibility was assessed by recruitment partner staff and members of the research team.

All participating LD caregivers were informed about the nature, content, aim, and approximate duration of the study. LD caregivers were given time to ask questions (with regard to, e.g., the reasons for the research). LD caregivers could choose to engage in interviews via telephone, video call, or—as the Cov-SARS-2 situation permitted—in person, either immediately upon first contact or, if preferred, at an appointed time on another day. If LD caregivers appeared overburdened during the interview or when completing the questionnaire, they were provided an appropriate “time out” period. A small gift was offered to participants to acknowledge their voluntary participation.

Qualitative Interviews

Semi-structured interviews pertaining to LD caregivers’ experiences of giving and receiving support, communication/contact, and burden/relief were conducted (F.A.H, R.U.) until relative data saturation was achieved. A flexible interview guide was used to elicit information on LD caregivers’ support experiences with the patient and with volunteer and professional hospice and palliative care personnel, with interviewees invited to discuss their experiences, expectations, and wishes in their preferred order (Herbst et al., 2022). The interview guide was reviewed and revised during a half-day project advisory board meeting and a subsequent pre-test with one LD caregiver. Relative data saturation, defined “as the point in data collection and analysis when new information produces little or no change to the codebook” (Guest et al., 2006) (<10%), was determined via constant analysis of the codes abstracted by the research team. The inclusion of LD caregivers ceased as soon as no new codes emerged from the analysis (i.e., when an analysis of the codes showed consolidated assumptions of participant perspectives).

Quantitative Instrument

A socio-demographic questionnaire (31 questions) was administered to gather further information on participants’ age, gender, family/relationship status, immigrant background, religious preference, educational attainment, occupation, and employment status, as well as the existence of additional caregivers for the patient. Patient data were also captured, referring to participants’ relationship to the patient, geographical distance from the patient (and time needed to reach the patient), frequency of in-person contact with the patient over the prior 3 months, and number of care hours provided to the patient each week. An adapted form of items 27–34 of the Eurofamcare Common Assessment Tool (EUROFAMCARE, 2022) was used to capture these and other support dimensions.

Data Processing and Analysis

All qualitative interviews were audio-recorded and transcribed verbatim. Participants were offered transcripts of their interviews upon request, though no participant took advantage of this. For communicative validation, key interview results were fed back to six long-distance caregivers in a digital 90-min workshop (February 2023) and discussed with them. Qualitative data were coded inductively and analyzed using MAXQDA (VERBI GmbH, Berlin, Germany), drawing on grounded theory principles (Glaser & Strauss, 1967; Strauss & Corbin, 1997). The procedures aimed at generating an understanding of LD caregivers’ perspectives on their personal situations regarding their provision and receipt of support, while enabling the researchers to develop hypotheses and draw theoretical assumptions on the basis of participants’ comments. Two researchers (F.A.H, R.U.) independently coded all text openly, selecting meaningful units and marking them with descriptive codes. Similar codes were then organized into concepts (i.e., subthemes) and further subsumed into higher-level categories representing primary themes. Discrepancies were resolved via discussion. A third researcher (G.M.) evaluated coding consistency. During further analysis, two researchers (F.A.H, R.U.) outlined (in the manner of an axial coding strategy) overarching themes based on the relationships between codes. Data from the socio-demographic questionnaire were analyzed using IBM SPSS Statistics 28 (SPSS Inc, Chicago, IL, USA), to generate means and frequencies.

All data were saved in a depersonalized format. The COREQ criteria for reporting qualitative research (Tong et al., 2007) were used, and Torensma et al.’s (2019) self-assessment instrument, “Diversity Responsiveness in Palliative Care Projects,” was administered throughout the project to ensure responsiveness to diversity issues.

Results

Sample Characteristics

Thirty-three individual one-time qualitative interviews were conducted and socio-demographic questionnaires were collected (during the caregiving situation: n = 23; in retrospect: n = 10). Recruitment was through hospice and palliative care services, Facebook groups, the project Web site, and newsletters, and therefore the recruitment success rate is unknown. Two interviews were conducted with the assistance of a professional interpreter. Table 1 presents the characteristics of all participating LD caregivers. The mean interview duration was 47.3 minutes (range: 19–70 minutes). Interviews were conducted via telephone (n = 28), video call (n = 1), and in person (n = 4).

Table 1.

Sample Socio-Demographic and Support Characteristics.

Participating long-distance caregivers (n = 33)
Caregiving situation, n (%)
Current	23 (69.7)
Former (<1 year prior to interview participation)	10 (30.3)
Mean age; R (years)	53.9; R 21–77
Sex, n (%)
Female	19 (57.6)
Male	14 (42.4)
In a romantic partnership, n (%)
Yes	19 (57.6)
No	14 (42.4)
Country of birth, n (%)
Germany	28 (84.8)*
Outside Germany	5 (15.1)
Religious preference (multiple answers possible), n (%)
None	15 (42.9)
Christianity	14 (40.0)
Islam	1 (2.9)
Buddhism	1 (2.9)
Hinduism	1 (2.9)
Other	3 (8.6)
University degree, n (%)	20 (60.6)
Employment, n (%)
Full-time employed	23 (69.7)
Part-time employed	3 (9.1)
Unemployed	1 (3.0)
Retired	4 (12.1)
University student	1 (3.0)
In vocational training	1 (3.0)
Number of further people living in own home, n (%)
0	11 (33.3)
1	10 (30.3)
2	6 (18.2)
3	6 (18.2)
Number of further people aged <18 yrs. Living in own home, n (%)
0	25 (75.8)
1	3 (9.1)
2	4 (12.1)
3	1 (3.0)
Relationship to the care recipient, n (%)^a
Daughter	15 (44.1)
Son	12 (35.3)
Mother	1 (2.9)
Father	1 (2.9)
Brother	1 (2.9)
Niece	1 (2.9)
Daughter-in-law	1 (2.9)
Sister-in-law	1 (2.9)
Separated husband	1 (2.9)
Mean geographical distance from care recipient; R (km)^a	429.2; R 65–1900
Geographical distance from care recipient in km (grouped in four categories), n (%)^a
<200	9 (26.5)
201–400	15 (44.1)
401–600	4 (11.8)
>600	6 (17.6)
Mean time needed to reach care recipient’s current place of residency; R (hrs)^a	4.2; R 1–11
Mean no. of days with in-person contact with care recipient per month within past 3 months; R^a	7.2; R 0–30
Mean no. of days since last in-person contact with care recipient; R^a	49.4; R 0–548
Mean time dedicated to caregiving per week; R (hrs)^a	16.5; R .25–144
Existence of further caregivers, n (%)^a
No	6 (17.6)
Yes	28 (82.4)
Further local caregivers only, n (%); mean no. (R)	16 (47.1); 2.1 (1–10)
Further LD caregivers only, n (%); mean no. (R)	6 (17.6); 0.5 (1–4)
Local caregivers as well as LD caregivers, n (%); mean no. (R)	6 (17.6); 4 (2–11)
Patients (n = 34^a)
Mean age; R (years)	76.7; R 37–93
Primary disease, n (%)
Cancer	14 (41.2)
Non-cancer	20 (58.8)
Sex, n (%)
Female	18 (52.9)
Male	16 (47.1)
Living situation, n (%)
Own home	14 (41.2)
Nursing home	10 (29.4)
Hospice	6 (17.6)
Assisted living	3 (8.8)
Shared housing arrangement for individuals with dementia	1 (2.9)

Note. R: range. *Rounding differences may occur.

^aThe sample here is n = 34, since one LD caregiver participated in relation to two care recipients.

The three most important dimensions of the support provided by LD caregivers pertained to: (1) emotional support, companionship, and reassurance (87.9% of LD caregivers), (2) making phone calls, writing letters/emails, and filling in forms for the patient (84.8%), and (3) organizing and managing care and support (66.7%) (see Table 2).

Table 2.

Support Dimensions.

Participating long-distance caregivers (n = 33)
Support dimensions	n (%)
Emotional support, companionship, reassurance	29 (87.9)
Making phone calls, writing letters/emails, filling in forms	28 (84.8)
Organizing/managing care and support (e.g., contacting services)	22 (66.7)
Shopping, picking up prescriptions, running other errands	19 (57.6)
Cooking, cleaning, laundry, gardening, other housekeeping chores	17 (51.5)
Guidance/information regarding the patient’s illness and support offers	17 (51.5)
Helping with washing, dressing, eating, using the toilet	16 (48.5)
Financial management	16 (48.5)
Assistance with medication, medical treatment, therapy	13 (39.4)
Transport/accompaniment to appointments (e.g., physicians)	10 (30.3)
Maintenance, repair (e.g., of patient’s own home)	9 (27.3)
Financial support	6 (18.2)
Other support	7 (21.2)

Interview Coding Findings: Long-Distance Caregivers’ Experiences of Providing and Receiving Support

The qualitative analysis of the interviews highlighted an overarching theme of “provided and received support.” The nature of the reported support ranged from the provision of emotional support (i.e., “emotional support (…) during phone calls, but you are (…) never really physically present”; LDC1) to the organization of care and the assumption of bureaucratic tasks (e.g., writing letters/emails, keeping track of income and expenses, making payments to [health] insurers) and keeping in touch with other local and LD family caregivers.

Six core subthemes emerged from the analysis:

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).

Hypotheses

The results of the interviews led to the following hypotheses about LD caregivers’ support experiences and unmet needs:

(i) LD caregivers tend to take on coordinative and advisory tasks from a distance, and support local caregivers.

(ii) LD caregivers perceive a positive effect on their caregiving experience when tasks are shared with other (local or LD) family caregivers and there is mutual support between them.

(iii) Some LD caregivers are dependent on the support of local family and non-kin caregivers (i.e., the patient’s relatives, neighbors, or friends) to maintain the care situation, particularly when the patient is situated in a home environment.

(iv) LD caregivers experience close, informative exchange with local family caregivers as helpful, because it allows them to gather information about the patient without relying on professional caregivers (who are more difficult to communicate with over a distance).

(v) LD caregivers experience emotional distress when they lack clarity on which caregiving responsibilities are being assumed by local family caregivers.

(vi) Some LD caregivers feel pressure from local caregivers or care facilities to be more involved in the patient’s care.

(vii) LD caregivers find telephone conversations with professional caregivers and volunteers helpful and supportive, particularly when they provide substantial information about the patient’s illness and care situation. Volunteers may provide a bridge between LD caregivers and the patient.

(viii) In the spirit of self-help, LD caregivers would value opportunities to exchange ideas with other LD caregivers.

(ix) LD caregivers would like professional caregivers to focus on them more proactively, particularly with regard to the implications of their geographical distance from the patient. LD caregivers desire a fixed contact person at care facilities.

(x) LD caregivers recommend that local care networks be developed to support patients.

(xi) LD caregivers emphasize the benefits of informing employers and colleagues about the LD caregiving situation.

Discussion

The present findings contribute to the literature on LD caregiving for patients at the end of life by broadening and deepening our understanding of the support experiences and needs of LD caregivers. To the best of our knowledge, the study was the first to empirically investigate this subject in the context of Germany (Herbst et al., 2022; Ülgüt et al., 2023).

The interview data showed that, due to LD caregivers’ distance from the patient, they typically provided emotional support via telephone, coordinated support within the family at a distance, advised other informal family caregivers, and assumed responsibility for bureaucratic tasks. In accordance with these findings, the quantitative survey on support dimensions demonstrated that LD caregivers mainly: (i) provided emotional support, (ii) took over bureaucratic tasks (e.g., filling in forms), and (iii) organized/managed care.

Six of the participating LD caregivers were sole caregivers and another six shared caregiving tasks with one to four other LD caregivers, but no local informal caregivers. Covering the experiences and unmet needs of both primary and secondary caregivers, the present study provides important insights to the caregiving literature, which is predominantly focused on primary caregivers. The results may therefore “help to identify new intervention opportunities for caregiving” (Committee on Family Caregiving for Older Adults et al., 2016). In the qualitative interviews, LD caregivers who shared caregiving tasks with local caregivers emphasized that local caregivers eased their caregiver burden by attending to the patient on short notice and taking on responsibility for practical tasks. In this vein, previous studies have shown that LD caregivers are less likely to self-identify as caregivers for patients at the end of life (Cagle, 2008), and that local caregivers are more likely to identify as primary caregivers (Mazanec, 2009).

In the present study, LD caregivers expressed a reliance on close exchange and cooperation with local family and non-kin caregivers. In particular, they recommended that local care networks be built to support patients. This finding supports the results of a mixed-method systematic review of the barriers and facilitators faced by LD caregivers, pointing to the importance of local support networks of friends and neighbors as additional sources of support that can relieve the long-distance caregiving burden (Bei et al., 2023).

Previous research (Tieman et al., 2023; Toseland et al., 2011) has noted the diversity of the caregiver population and emphasized that caregivers have different information needs at different points in the patient’s illness trajectory. Hence, in their Australian study, Tieman et al. (2023) developed an open access online caregiver resource that enabled immediate access to patient information. They based the information resource on a literature review and a scan of online resources, as well as interviews and focus groups with caregivers about their needs. The present results, alongside the results from a scoping review (Ülgüt et al., 2023), may be similarly used to guide the development of an online information resource for LD caregivers located in Germany.

Strengths and Limitations of the Study

The strengths of the present study pertain to its elucidation of the perspectives of LD caregivers of terminally ill relatives. The research drew on a varied sample of participants with different kinship relations to the patient, ages (ranging from 21–77 years), backgrounds (including five who were providing care from abroad or had previously migrated to Germany), religious preferences, and relationship and employment statuses. LD caregivers also varied widely in the time and number of days they spent caregiving. Furthermore, the study considered the perspectives of LD caregivers of patients with oncological (n = 14) and non-oncological (n = 20) diseases, thus contributing to the smaller body of literature involving caregivers of patients with non-oncological diseases in hospice and/or palliative care.

However, the generalizability of the results is subject to certain limitations. Different LD caregivers may have different support needs, depending on their subjective configured histories and particular contexts. Nonetheless, we hope that readers will be able to translate the present results to other contexts and draw inferences for other settings, via the detailed descriptions offered. In particular, during the Cov-SARS-2 pandemic, informal caregivers were challenged by the same social distancing measures that apply more generally to LD caregivers (e.g., communication with the patient contingent on communication technologies, information dependency on health professionals with in-person contact with the patient), making the results potentially generalizable to other pandemic situations. Finally, in the recruitment centers, it was not possible to assess the total number of LD caregivers who were eligible for the study and the reasons why they were included or excluded.

Conclusion

The present study elucidated the specific support experiences and unmet needs of LD caregivers for patients in end-of-life situations. On the basis of the LD caregiver responses, hypotheses were deduced to inform recommendations for support interventions. One key recommendation that emerged was that volunteers in hospice and palliative care should assist patients in using communication technologies, in order to improve the quality of the exchange between patients and LD caregivers.

In the present study, a diversity-oriented recruitment strategy was applied (Torensma et al., 2019). However, the project team has since been in contact with hospice and palliative care facilities focused on discriminated and minority groups, and become aware of the importance of chosen family for some gay male patients. Therefore, we suggest that further research assess the specific situation of non-kin caregivers and chosen family. The present study has shown that local non-kin caregivers play an important role when local family caregivers are lacking, while also highlighting that non-kin caregivers may act as a bridge between LD family caregivers and patients.

Supplemental Material

Supplemental Material - “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

Supplemental Material for “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 by Franziska A. Herbst and Stephanie Stiel in OMEGA - Journal of Death and Dying

Footnotes

Acknowledgments

The authors gratefully thank all family caregivers for their participation in this project. The authors would like to thank Rojda Uelguet for conducting eight family caregiver interviews and for her participation in the data analysis. Gabriele Mueller-Mundt deserves thanks for reviewing the consistency of the qualitative interview data. Thanks are due to Nilab Kamandi and Johanna Hofmann for transcribing the interviews. The authors acknowledge Valerie Appleby’s professional copyediting of the manuscript.

Author Contributions

F.A.H. (female), a medical anthropologist working as a senior researcher, wrote the grant application, developed the study design, led the study, collected and analyzed the data, and wrote the manuscript. S.S. (female), a psychologist working as a senior researcher, supported the development of the interview guide and socio-demographic questionnaire and critically revised the manuscript based on her longstanding expertise in end-of-life research. Both authors approved the final version of the manuscript.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The present study formed part of the larger project “Long-distance caregiving at the end of life (LoCatE),” financed by the German Research Foundation (DFG) (Project N° 449568227). The funder did not play any role in the study design, collection, analysis or interpretation of the data, or the drafting of this article.

Ethics Statement

ORCID iDs

Franziska A. Herbst

Stephanie Stiel

Data Availability Statement

The datasets analyzed in this study are available from the corresponding author upon reasonable request.

Supplemental Material

Supplemental material for this article is available online.

Author Biographies

Franziska A. Herbst is a medical anthropologist and was awarded a DPhil at the University of Heidelberg. She led the project LoCatE and heads the research department at the Institute for General Practice and Palliative Care at Hannover Medical School.

Stephanie Stiel, trained psychologist, has been working in palliative care since 2007 and is involved in health services research and student teaching. Her research focuses on interdisciplinary and multiprofessional care for patients at the end of life and their relatives.

References

Ahmad

(2016). Transnational caregiving for my father: An opportunity and a blessing. Journal of Social Work in End-of-Life and Palliative Care, 12(1–2), 6–9. https://doi.org/10.1080/15524256.2016.1156599

Baldassar

Wilding

Baldock

(2007). Long-distance care-giving: Transnational families and the provision of aged care. In Paoletti

(Ed.), Family caregiving for older disabled people: Relational and institutional issues (pp. 201–228). Nova Science Publishers.

Battley

J. E.

Balding

Gilligan

O'Connell

O'Brien

(2012). From cork to Budapest by skype: Living and dying. BMJ Supportive and Palliative Care, 2(2), 168–169. https://doi.org/10.1136/bmjspcare-2012-000210

Bei

Morrison

Zarzycki

Vilchinsky

(2023). Barriers, facilitators, and motives to provide distance care, and the consequences for distance caregivers: A mixed-methods systematic review. Social Science and Medicine, 321(2023), Article 115782. https://doi.org/10.1016/j.socscimed.2023.115782

Bevan

J. L.

Sparks

(2011). Communication in the context of long-distance family caregiving: An integrated review and practical applications. Patient Education and Counseling, 85(1), 26–30. https://doi.org/10.1016/j.pec.2010.08.003

Bledsoe

L. K.

Moore

S. E.

Collins

W. L.

(2010). Long distance caregiving: An evaluative review of the literature. Ageing International, 35(4), 293–310. https://doi.org/10.1007/s12126-010-9062-3

Bravo

(2017). Coping with dying and deaths at home: How undocumented migrants in the United States experience the process of transnational grieving. Mortality, 22(1), 33–44. https://doi.org/10.1080/13576275.2016.1192590

Bruhn

J. G.

(2016). Vignettes of family caregiving. In Bruhn

J. G.

(Ed.), After diagnosis: Family caregiving with hospice patients (pp. 41–50). Springer.

Cagle

(2008). Informal caregivers of advanced cancer patients: The impact of geographic proximity on social support and bereavement adjustment. Virginia Commonwealth University. [Doctoral thesis].

10.

Cagle

Kovacs

(2011). Informal caregivers of cancer patients: Perceptions about preparedness and support during hospice care. Journal of Gerontological Social Work, 54(1), 92–115. https://doi.org/10.1080/01634372.2010.534547

11.

Cahill

Bielsten

Zarit

S. H.

(2023). Developing a framework for the support of informal caregivers: Experiences from Sweden, Ireland, and the United States. Research on Aging, 45(3–4), 385–395. https://doi.org/10.1177/01640275221113356

12.

Casañas i Comabella

(2017). Distance caregiving in palliative care: A mixed methods study exploring the role of ehealth. Oxford Brookes University. [Doctoral thesis].

13.

Committee on Family Caregiving for Older Adults Board on Health Care Services Health and Medicine Division Schulz

Eden

(2016). Family caregiving roles and impacts. In: Schulz

Eden

(Eds.), Families caring for an aging America. (n. p.). National Academies Press. https://doi.org/10.17226/23606

14.

Croucher

Gilroy

Bevan

Attuyer

(2021). The mobilities of care in later life: Exploring the relationship between caring and mobility in the lives of older people. Ageing and Society, 41(8), 1788–1809. https://doi.org/10.1017/S0144686X20000100

15.

EUROFAMCARE . (2022). Common assessment Tool – CAT. Retrieved on 11/30/2023 from. https://www.uke.de/extern/eurofamcare-de/deli.php

16.

Flanagan

DeSanto-Madeya

Simms

(2014). Using Skype to facilitate presence at the end of life. Journal of Hospice and Palliative Nursing, 16(8), 489–494. https://doi.org/10.1097/NJH.0000000000000106

17.

Glaser

Strauss

(1967). The discovery of grounded theory: Strategies for qualitative research. Aldine.

18.

Guest

Bunce

Johnson

(2006). How many interviews are enough? An experiment with data saturation and variability. Field Methods, 18(1), 59–82. https://doi.org/10.1177/1525822x05279903

19.

Herbst

F. A.

Schneider

Stiel

(2022). Long-distance caregiving at the end of life: A protocol for an exploratory qualitative study in Germany. BMC Palliative Care, 21(1), 69. https://doi.org/10.1186/s12904-022-00967-8

20.

Hermanns

Mastel-Smith

(2012). Caregiving: A qualitative concept analysis. Qualitative Report, 17(38), 1–18. https://doi.org/10.46743/2160-3715/2012.1727

21.

Johnston

Hillier

Purdon

Pears

Robson

(2012). Opportunities for improving the quality of life of dying persons: Use of technology to connect people at the end of Life. Journal of Palliative Care, 28(3), 178–180. https://doi.org/10.1177/082585971202800309

22.

Jones

(2014). Using Skype to support palliative care surveillance. Nursing Older People, 26(1), 16–19. https://doi.org/10.7748/nop2014.02.26.1.16.e546

23.

Kimball

M. H.

(2015). Caregiving roles reversed: Becoming my mother’s mother. In Gaugler

J. E.

Kane

R. L.

(Eds.), Family caregiving in the new normal (pp. 17–22). Elsevier.

24.

Koerin

B. B.

Harrigan

M. P.

(2003). PS I. Love you. Journal of Gerontological Social Work, 40(1–2), 63–81. https://doi.org/10.1300/J083v40n01_05

25.

Mazanec

(2009). Distance caregiving a parent with advanced cancer. Case Western Reserve University. [Doctoral thesis].

26.

Mazanec

(2012). Distance caregiving a parent with cancer. Seminars in Oncology Nursing, 28(4), 271–278. https://doi.org/10.1016/j.soncn.2012.09.010

27.

Mazanec

Daly

B. J.

Ferrell

Prince-Paul

(2011). Lack of communication and control: Experiences of distance caregivers of parents with advanced cancer. Oncology Nursing Forum, 38(3), 307–313. https://doi.org/10.1188/11.ONF.307-313

28.

Mertens

D. M.

(2003). Mixed methods and the politics of human research: The transformative emancipatory perspective. In Tashakkori

Teddie

(Eds.), Handbook of mixed methods in social behavioral research (pp. 135–164). Sage.

29.

Mills

Bonner

Francis

(2006). Adopting a constructivist approach to grounded theory: Implications for research design. International Journal of Nursing Practice, 12(1), 8–13. https://doi.org/10.1111/j.1440-172X.2006.00543.x

30.

Musacchio

C. M.

(2021). Exploring the impact of psychological detachment on stress and anxiety in distance caregivers of cancer patients. Case Western Reserve University. [Doctoral thesis].

31.

Payne

(2012). White paper on improving support for family carers in palliative care: Part 1. European Journal of Palliative Care, 17(5), 238–245.

32.

Roff

L. L.

Martin

S. S.

Jennings

L. K.

Parker

M. W.

Harmon

D. K.

(2007). Long distance parental caregivers’ experiences with siblings: A qualitative study. Qualitative Social Work, 6(3), 315–334. https://doi.org/10.1177/1473325007080404

33.

Starr

L. T.

Washington

Pitzer

Oliver

D. P.

Demiris

(2023). Close but not close enough: How distance caregiving is associated with hospice family caregiver hospice communication experiences. Health Communication, 39(3), 482–492. Online first. https://doi.org/10.1080/10410236.2023.2170199

34.

Statistisches Bundesamt (Destatis) . (2022). Bevölkerung und Erwerbstätigkeit. Bevölkerung mit Migrationshintergrund—ergebnisse des Mikrozensus 2020. (Fachserie 1. Reihe 2.2). Retrieved on 11/30/2023 from. https://www.destatis.de/DE/Themen/Gesellschaft-Umwelt/Bevoelkerung/Migration-Integration/Publikationen/Downloads-Migration/migrationshintergrund-endergebnisse-2010220207004.pdf?__blob=publicationFile

35.

Stone

Mikucki-Enyart

Middleton

Caughlin

Brown

(2012). Caring for a parent with lung cancer: Caregivers’ perspectives on the role of communication. Qualitative Health Research, 22(7), 957–970. https://doi.org/10.1177/1049732312443428

36.

Strauss

Corbin

(1997). Grounded theory in practice. Sage.

37.

Tieman

Hudson

Thomas

Saward

Parker

(2023). Who cares for the carers? Carerhelp: Development and evaluation of an online resource to support the wellbeing of those caring for family members at the end of their life. BMC Palliative Care, 22(1), 98. https://doi.org/10.1186/s12904-023-01225-1

38.

Tong

Sainsbury

Craig

(2007). Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care, 19(6), 349–357. https://doi.org/10.1093/intqhc/mzm042

39.

Torensma

Onwuteaka-Philipsen

B. D.

Strackee

K. L.

Oosterveld-Vlug

M. G.

de Voogd

Willems

D. L.

Suurmond

J. L.

(2019). How to help researchers in palliative care improve responsiveness to migrants and other underrepresented populations: Developing and testing a self-assessment instrument. BMC Palliative Care, 18(1), 83. https://doi.org/10.1186/s12904-019-0470-1

40.

Toseland

R. W.

Haigler

D. H.

Monahan

D. J.

(2011). Education and support programs for caregivers: Research, practice, policy. Springer. https://doi.org/10.1007/978-1-4419-8031-1

41.

Ülgüt

Stiel

Herbst

F. A.

(2023). Experiences and support needs of informal long distance caregivers at the end of life: A scoping review. BMJ Open, 13(4), Article e068175. https://doi.org/10.1136/bmjopen-2022-068175

42.

Van der Geest

(2002). Respect and reciprocity: Care of elderly people in rural Ghana. Journal of Cross-Cultural Gerontology, 17(1), 3–31. https://doi.org/10.1023/A:1014843004627

43.

Wagner

D. L.

(1997). Caring across the miles: Findings of a survey of long-distance caregivers. Final report for the national council on the aging. National council on the aging.

44.

Zuo

Mao

Chi

(2014). End-of-life family caregiving for older parents in China's rural Anhui province. Canadian Journal on Aging, 33(4), 448–461. https://doi.org/10.1017/S0714980814000373