Barriers, facilitators, and motives to provide distance care, and the consequences for distance caregivers: A mixed-methods systematic review

Bei, Eva; Morrison, Val; Zarzycki, Mikołaj; Vilchinsky, Noa

doi:10.1016/j.socscimed.2023.115782

Cited by 6 publications

(9 citation statements)

References 44 publications

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“…Interestingly, there seems to be a consensus among LD caregivers of terminally ill patients at the end of life that geographical distance provides a buffer zone that shields LD caregivers from exposure to the terminal illness and that may contribute to reducing everyday stress. This issue appears to be less salient in LD caregiving situations for patients suffering from chronic illness, disability or frailty 42…”

Section: Discussionmentioning

confidence: 99%

“…Moreover, the results show that LD caregivers perceive the geographical distance as a communication barrier, and they try to bridge this distance by video and telephone calls. Specific to the population of LD caregivers of patients in end-of-life situations in comparison with LD caregivers of ageing care recipients 42 were reported limitations of video-calling in the process of accompanying a loved one through dying.…”

Section: Discussionmentioning

confidence: 99%

“…This issue appears to be less salient in LD caregiving situations for patients suffering from chronic illness, disability or frailty. 42 …”

Section: Discussionmentioning

confidence: 99%

“…Another burdensome factor is the financial impact of LD caregiving as also argued in a topical review by Bei et al . 42 The literature shows that the yearly outgoings of LD caregivers are significantly higher than those of local caregivers. 9 52 For instance, a national survey in the USA identified $8728 (compared with $5885 and $4570 for coresiding and proximate caregivers, respectively) in annual expenses for travel, phone bills, payments to support staff, and other costs associated with LD caregiving.…”

Section: Discussionmentioning

confidence: 99%

“…According to the international literature on local caregivers,43 44 including those who are caring for patients with dementia,45 46 and the studies included in this review on LD caregivers, family caregivers of seriously ill patients may nevertheless report benefits related to this experience. Examining barriers, facilitators, and motives to provide LD care, Bei et al ’s42 systematic mixed-methods review showed that LD caregivers of care recipients suffering from chronic illness, disability or frailty experienced feelings of pleasure, personal satisfaction and happiness when they had ensured care for their relative. Instead, the studies we reviewed on LD caregiving in terminal illness situations rather reported that LD caregivers found comfort in the fact that they were unable to change the situation.…”

Section: Discussionmentioning

confidence: 99%

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Experiences and support needs of informal long-distance caregivers at the end of life: a scoping review

2023

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ObjectivesThere is a lack of research on the specific experiences and needs of geographically distant kin caregivers in end-of-life situations. Clinicians and researchers would benefit from a systematic overview. The scoping review aimed at examining the international literature on the experiences and needs of informal long-distance (LD) caregivers at the end of life, to address gaps in the evidence base, and to make recommendations for further research.DesignThe scoping review was conducted according to the methodological framework of Arksey and O’Malley. Studies of various designs involving kin caregivers were analysed narratively.Data sourcesA highly sensitive strategy was used to search CINAHL, Google Scholar, PsycInfo, PubMed and Web of Science Core Collection, from inception to 8 November 2021, with searches rerun in CINAHL, PsycInfo and PubMed on 31 January 2023. An additional hand search of the reference lists of the identified articles was performed.ResultsTwo authors independently assessed the titles and abstracts of 3827 scientific papers. As a result, 89 full texts were reviewed and 20 articles plus one review were included in the review. Five major themes were identified: (1) LD as a barrier to caregiving, (2) communication difficulties and the role of video and telephone calls, (3) the burdens and benefits of LD caregiving, (4) interaction and conflict with local caregivers and (5) LD caregivers’ wishes and needs for support.ConclusionsFurther quantitative and mixed-methods studies should be undertaken to improve our understanding of LD caregiving for relatives at the end of life. Studies to explore the feasibility and implementation of communication technologies in end-of-life LD caregiving are also needed.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

“…This issue appears to be less salient in LD caregiving situations for patients suffering from chronic illness, disability or frailty. 42 …”

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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Experiences and support needs of informal long-distance caregivers at the end of life: a scoping review

2023

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Connecting Through Caregiving: Reappraising Intergeneration Relationship in Dementia Caregiving

Au,

Lai,

Chow

et al. 2023

Applied Research Quality Life

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Purpose Dementia caregiving presents a challenge in life transition wherein the adult child is caring for his or her parents. The study examined the effects of a telephone-administered perspective-taking intervention for adult child caregivers of persons with Alzheimer’s Disease and Dementia to reduce levels of depressive symptoms as well as presence and reaction to behavioral problems and also to enhance social support. The mediation effect of perspective-taking on depressive symptoms was also examined. Method A two-arm cluster randomized controlled trial was conducted for 176 participants with 24 clusters for the 12-week Connecting Through Caregiving (CTC) intervention and Basic Skill Training (BSB). The CTC intervention integrated perspective taking with basic skill training. The primary outcome was depressive symptoms. The first secondary outcome was the presence and reaction to behavioral problems in the care-recipients. The second secondary outcome was social support. The trial also examined whether intervention effects were mediated by perspective-taking. Measures were obtained at baseline Week 1 (pre-intervention), Week 12 (post-intervention) and Week 24 (three-month follow up). Results Data was collected from 2018 to 2021. Ninety-one participants completed the intervention for CTC and eighty-five completed BSB. In terms of the primary outcome, as compared to the BSB group, the CTC group reported significantly greater reductions in depressive symptoms. For the secondary outcomes, the CTC group also reported reduced perceived presence and reaction to behavioral and memory problems of the care recipient as well as increased social support. Perspective-taking was found to mediate between intervention and reduction of depressive symptoms of the caregiver. No moderation effect on the intervention was found for the presence of COVID-19. Conclusion The results provided support for the efficacy of the CTC telephone intervention. Findings have implications for enhancing sustainable care for non-digitalized older adults in the wider society. Trial Registration ClinicalTrial.gov NCT03030027

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“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

Herbst,

Stiel

2024

Omega (Westport)

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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.

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Barriers, facilitators, and motives to provide distance care, and the consequences for distance caregivers: A mixed-methods systematic review

Cited by 6 publications

References 44 publications

Experiences and support needs of informal long-distance caregivers at the end of life: a scoping review

Experiences and support needs of informal long-distance caregivers at the end of life: a scoping review

Connecting Through Caregiving: Reappraising Intergeneration Relationship in Dementia Caregiving

“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

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