Close but Not Close Enough: How Distance Caregiving is Associated with Hospice Family Caregiver Hospice Communication Experiences

Starr, Lauren T; Washington, Karla T.; Pitzer, Kyle; Oliver, Debra Parker; Demiris, George

doi:10.1080/10410236.2023.2170199

Cited by 4 publications

(7 citation statements)

References 80 publications

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“…The included articles were published between 2007 and 2023, with the majority (nine studies) published between 2011 and 2014. Fourteen studies used qualitative methods,24 25 27–38 two studies employed mixed methods22 23 and four studies reported quantitative results 21 39–41. The qualitative studies drew on descriptive reflections and case studies, guided interviews and open-ended questionnaire data; and the quantitative studies used surveys, questionnaires and medical data.…”

Section: Resultsmentioning

confidence: 99%

“…The qualitative studies drew on descriptive reflections and case studies, guided interviews and open-ended questionnaire data; and the quantitative studies used surveys, questionnaires and medical data. Three of the quantitative scientific papers were based on secondary data analyses 39–41…”

Section: Resultsmentioning

confidence: 99%

“…The included studies addressed LD caregivers for patients with oncological21 23–25 27 30 34 36 37 39 and non-oncological31 33 38 diseases. Four studies addressed LD caregivers for patients with both oncological or non-oncological diseases 22 28 29 32 41. The reported studies included primary caregivers,31 secondary caregivers24 25 28 or both 22 23 39.…”

Section: Resultsmentioning

confidence: 99%

“…The reported studies included primary caregivers,31 secondary caregivers24 25 28 or both 22 23 39. Caregiver status was not always clearly identified in the studies and/or caregivers were included regardless of their primary/secondary caregiver status 21 27 29 30 32–38 40 41…”

Section: Resultsmentioning

confidence: 99%

“…Seven of the studies reported that LD caregivers perceived geographical distance as a communication barrier 22 25 28 32 37 38 41. From the literature, it appears that communication technologies such as video-calling and telephone-calling were valued and used by LD caregivers to overcome communication barriers 22 27 29 30 32 35.…”

Section: Resultsmentioning

confidence: 99%

See 4 more Smart Citations

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: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

See 3 more Smart Citations

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

2023

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Recommendations for Psychosocial Support for Long-Distance Caregivers of Terminally Ill Patients

Herbst,

Schneider,

Stiel

2025

Journal of Pain and Symptom Management

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Goals of care and end-of-life communication needs of persons with chronic respiratory disease

Reinke,

Fasolino,

Sullivan

2023

Current Opinion in Supportive &Amp; Palliative Care

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Purpose of the review To highlight recent advances in effective communication among persons with chronic respiratory diseases. The authors focus on communication science related to goals of care (GOC) discussions, medical devices, and life-sustaining invasive treatments. The authors discuss important considerations when working with individuals with low literacy and rurality. Communication handoffs between respiratory clinicians and/or palliative care to hospice clinicians are summarized to ensure effective person-centered and caregiver-centered care. Recent findings Studies suggest the following communication approaches: (1) clarify differences between palliative and end of life; (2) conduct conversations early and gradual throughout the illness trajectory; (3) distinguish types of GOC discussions as they relate to treatment preferences; (4) for patients from rural communities, include family members and spiritual leaders; (5) assess literacy and employ supportive strategies; (6) apply time-limited-trial framework for life-sustaining treatment (LST) decisions; and (7) standardize processes for communication handoffs to hospice clinicians to improve communication fidelity. Summary Effective communication tools for clinicians to engage in GOC discussions for persons with chronic respiratory diseases are grounded in a patient-centered framework. A trained clinician should lead these conversations and include interdisciplinary team members throughout the disease trajectory including at the end of life. These approaches may enable patients to express their values and care preferences as they evolve over time.

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Close but Not Close Enough: How Distance Caregiving is Associated with Hospice Family Caregiver Hospice Communication Experiences

Cited by 4 publications

References 80 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

Recommendations for Psychosocial Support for Long-Distance Caregivers of Terminally Ill Patients

Goals of care and end-of-life communication needs of persons with chronic respiratory disease

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