When it comes to death, there is no place like home… Or is there?

Bakitas, Marie; Dionne‐Odom, J. Nicholas

doi:10.1177/0269216317703861

Cited by 5 publications

(3 citation statements)

References 13 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…It is necessary to bring palliative competence to those who need it in urban and rural areas 24/7. Due to scarce resources in Norwegian community care, it is essential to consider increased use of tele-health [80], not as a substitute for, but as a complement to healthcare professionals.…”

Section: Discussionmentioning

confidence: 99%

A sense of security in palliative homecare in a Norwegian municipality; dyadic comparisons of the perceptions of patients and relatives - a quantitative study

Hov

Bjørsland

Kjøs³

et al. 2020

BMC Palliat Care

View full text Add to dashboard Cite

Background: As palliative care increasingly takes place in patients' homes, perceptions of security among patients in the late palliative phase and their relatives are important. Aim: To describe and compare patient-relative dyads regarding their perceptions of security in palliative homecare, including the perceived security of the actual care given to the patients, as well as the subjective importance of that care. Methods: A cross sectional questionnaire study including 32 patient-relative dyads was conducted in an urban municipality in Norway. Patients were in a late palliative phase and received palliative homecare. Each patient proposed one relative. Data were collected using a modified version of the Quality from the Patients' Perspective instrument (QPP), which focuses on security and comprises three dimensions: medical-technical competence, identity-orientation approach and physical-technical conditions. Context-specific scales containing four aspects (competence, continuity, coordination/ cooperation, availability) were added. The instrument contains two response scales; perceived reality (PR) and subjective importance (SI). Data were analysed by descriptive statistics, Chi-squared test, T-test and Wilcoxon's signed rank test. Results: Patients had high mean scores on the PR-scale for the sense of security in palliative homecare in the dimensions of medical-technical competence and physical-technical conditions. There were three low mean scores on the PR-scale: the aspect of continuity from patients and the aspects of continuity and coordination/cooperation from relatives. The patients scored the SI scale statistically significantly higher than the PR scale in the identity-orientation approach dimension and in the aspect of continuity, while relatives did so in all dimensions and aspects. The intra-dyadic patient-relative comparisons show statistically significant lower scores from relatives on the PR-scale in the dimensions of medical-technical competence, physical-technical conditions, identity-orientation approach and the aspect coordination/cooperation. Conclusions: There are several statistically significant differences between patients and relatives' perceptions of security in the palliative homecare received (PR) compared with the subjective importance of the care (SI) and statistically significant differences in the patient-relative dyads in PR. A relatively mutual sense of security in palliative homecare is important for patient-relative dyads, as relatives often provide care and act as patients' spokespersons. What they assess as important can guide the development of palliative homecare.

show abstract

Section: Discussionmentioning

confidence: 99%

A sense of security in palliative homecare in a Norwegian municipality; dyadic comparisons of the perceptions of patients and relatives - a quantitative study

Hov

Bjørsland

Kjøs³

et al. 2020

BMC Palliat Care

View full text Add to dashboard Cite

show abstract

“…While other PC RCTs have measured the impact of tele-health [ 29 , 37 – 40 ], a novel feature of this study’s intervention was the development by community stakeholders of a culturally based intervention, a key aspect of PC, since culture fundamentally shapes how individuals make meaning out of illness, suffering, and dying [ 41 ] and strongly influences their response to diagnosis, illness, and treatment preferences [ 41 – 43 ]. Community-based participatory research (CBPR) was the guiding method to develop this intervention, in which community members were equal partners.…”

Section: Introductionmentioning

confidence: 99%

Community Tele-pal: A community-developed, culturally based palliative care tele-consult randomized controlled trial for African American and White Rural southern elders with a life-limiting illness

Watts

Gazaway

Malone

et al. 2020

Trials

Self Cite

View full text Add to dashboard Cite

Background: Patients living in rural areas experience a variety of unmet needs that result in healthcare disparities. The triple threat of rural geography, racial inequities, and older age hinders access to high-quality palliative care (PC) for a significant proportion of Americans. Rural patients with life-limiting illness are at risk of not receiving appropriate palliative care due to a limited specialty workforce, long distances to treatment centers, and limited PC clinical expertise. Although culture strongly influences people's response to diagnosis, illness, and treatment preferences, culturally based care models are not currently available for most seriously ill rural patients and their family caregivers. The purpose of this randomized clinical trial (RCT) is to compare a culturally based tele-consult program (that was developed by and for the rural southern African American (AA) and White (W) population) to usual hospital care to determine the impact on symptom burden (primary outcome) and patient and care partner quality of life (QOL), care partner burden, and resource use postdischarge (secondary outcomes) in hospitalized AA and White older adults with a life-limiting illness. Methods: Community Tele-pal is a three-site RCT that will test the efficacy of a community-developed, culturally based PC teleconsult program for hospitalized rural AA and W older adults with life-limiting illnesses (n = 352) and a care partner. Half of the participants (n = 176) and a care partner (n = 176) will be randomized to receive the culturally based palliative care consult. The other half of the patient participants (n = 176) and care partners (n = 176) will receive usual hospital care appropriate to their illness. Discussion: This is the first community-developed, culturally based PC tele-consult program for rural southern AA and W populations. If effective, the tele-consult palliative program and methods will serve as a model for future culturally based PC programs that can reduce patients' symptoms and care partner burden.

show abstract

“…[ 2 ] Respect of individual values and preferences throughout the treatment course, while maximizing quality of life, is now regarded as an important part of the management of incurable patients. [ 3 ]…”

Section: Introductionmentioning

confidence: 99%

The importance of family caregiving to achieving palliative care at home

et al. 2017

View full text Add to dashboard Cite

Rationale:The primary setting of palliative care has shifted from inpatient care to patients’ residences. Family caregiving is essential for patients with life-limiting illnesses to receive palliative care at home, however little information is available regarding potential interventions to achieve palliative homecare for those without sufficient support from family members in various settings, including disasters.Patient concerns:In March 2011, Fukushima, Japan experienced an earthquake, tsunami and nuclear disaster. In August 2015, a 59-year-old Japanese female presented to our hospital, located 23 km north of Fukushima Daiichi Nuclear Power Plant, with a right breast ulcer.Diagnoses:The patient was diagnosed with stage IV breast cancer.Interventions:The patient's general condition gradually worsened despite a one-year course of chemotherapy, and she became bedridden after a fall in October 2016. Although the patient wished to receive palliative homecare, this appeared challenging to achieve because she resided alone in a temporary housing shelter. Although she originally lived with her family in Odaka District, Fukushima, she relocated outside of the city following evacuation orders after the disaster. The evacuation orders for Odaka District were still in effect when she returned to the city alone in 2014. We contacted her sister who moved apart from her during the evacuation, and explained the necessity of family caregiving to enable her palliative homecare.Outcomes:The sister decided to move back to their original residence in Odaka District and live with the patient again. The patient successfully spent her end-of-life period and died at home.Lessons:Health care providers and community health workers may need to take a pro-active approach to communicating with family members to draw informal support to enable patients’ end-of-life management according to their values and preferences. This is a lesson which may be applicable to broader healthcare settings beyond cancer, or disaster contexts, considering that population ageing and social isolation may continue to advance worldwide.

show abstract

When it comes to death, there is no place like home… Or is there?

Cited by 5 publications

References 13 publications

A sense of security in palliative homecare in a Norwegian municipality; dyadic comparisons of the perceptions of patients and relatives - a quantitative study

A sense of security in palliative homecare in a Norwegian municipality; dyadic comparisons of the perceptions of patients and relatives - a quantitative study

Community Tele-pal: A community-developed, culturally based palliative care tele-consult randomized controlled trial for African American and White Rural southern elders with a life-limiting illness

The importance of family caregiving to achieving palliative care at home

Contact Info

Product

Resources

About