Dataset Information

Systematic review of conceptual and theoretical frameworks used in palliative care and end-of-life care research studies.

ABSTRACT:

Background

Frameworks are the conceptual underpinnings of the study. Both conceptual and theoretical frameworks are often used in palliative and end-of-life care studies to help with study design, guide, and conduct investigations. While an increasing number of investigators have included frameworks in their study, to date, there has not been a comprehensive review of frameworks that were utilized in palliative and end-of-life care research studies.

Aim

To summarize conceptual and theoretical frameworks used in palliative and end-of-life care research studies. And to synthesize which of eight domains from the National Consensus Project's Clinical Practice Guidelines for Quality Palliative Care (fourth edition) each framework belongs to.

Design

Systematic review.

Data sources

Four electronic databases (EMBASE, the Cumulative Index to Nursing and Allied Health, PsychINFO, and PubMed) were searched from July 2010 to September 2021.

Results

A total 2231 citations were retrieved, of which 44 articles met eligibility. Across primary studies, 33,801 study participants were captured. Twenty-six investigators (59.1%) proposed previously unpublished frameworks. In 10 studies, investigators modified existing frameworks, mainly to overcome inherent limitations. In eight studies, investigators utilized existing frameworks referenced in previously published studies. There were eight orientations identified among 44 frameworks we reviewed (e.g. system, patient, patient-doctor).

Conclusions

We examined palliative and end-of-life research studies to identify and characterize conceptual or theoretical frameworks proposed or utilized. Of 44 frameworks we reviewed, 21 studies (47.7%) were aligned with a Clinical Practice Guideline's single domain, while the rest two or more of eight guidelines in quality palliative care domains.

SUBMITTER: Tark A

PROVIDER: S-EPMC10790406 | biostudies-literature | 2023 Jan

REPOSITORIES: biostudies-literature

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Publications

Systematic review of conceptual and theoretical frameworks used in palliative care and end-of-life care research studies.

Tark Aluem A Estrada Leah V LV Stone Patricia W PW Baernholdt Marianne M Buck Harleah G HG

Palliative medicine 20220908 1

<h4>Background</h4>Frameworks are the conceptual underpinnings of the study. Both conceptual and theoretical frameworks are often used in palliative and end-of-life care studies to help with study design, guide, and conduct investigations. While an increasing number of investigators have included frameworks in their study, to date, there has not been a comprehensive review of frameworks that were utilized in palliative and end-of-life care research studies.<h4>Aim</h4>To summarize conceptual and ...[more]

PMID: 36081200

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Project description:Background/aimsThe use and costs of health care rise substantially in the months prior to death, and although the use of palliative care services may be expected to lead to less costly care, the evidence is mixed. We analysed the costs of care over the last year of life and the extent to which these are associated with the use and duration of specialist palliative care (SPC) for decedents who died from cancer or another life-limiting illness.MethodsThe decedents were participants in a cohort study of older residents of the state of New South Wales, Australia. Using linked survey and administrative health data from 2007 to 2016, two cohorts were identified: n = 10,535 where the cause of death was cancer; and n = 11,179 where the cause of death was another life-limiting illness. Costs of various types were analysed with separate risk-adjusted linear regression models for the last 1, 3, 6, 9 and 12 months before death and for both cohorts. SPC was categorised according to time to death from first contact with the service as 1-7 days, 7-30 days, 30-180 days and more than 180 days.ResultsSPC use was higher among the cancer cohort (30.0%) relative to the non-cancer cohort (4.8%). The mean costs over the final year of life were AU$55,037 (SD 45,059) for the cancer cohort and AU$35,318 (SD 41,948) for the non-cancer cohort. Earlier use of SPC was associated with higher costs over the last year of life but lower costs in the last 1 and 3 months for both cohorts. Initiating SPC use more than 180 days before death was associated with a mean difference relative to the no SPC group of AU$15,590 (95% CI 10,617 to 20,562) and AU$13,739 (95% CI 733 to 26,746) over the last year of life for those dying from cancer and another illness, respectively. The same differences over the last month of life were - AU$2810 (95% CI - 3945 to - 1676) and - AU$4345 (95% CI - 6625 to - 2066). Admitted hospital care was the major driver of costs, with longer SPC associated with lower rates of death in hospital for both cohorts.ConclusionEarly initiation of SPC was associated with higher costs over the last year of life and lower costs over the last months of life. This was the case for both the cancer and non-cancer cohorts, and appeared to be largely attributed to reduced hospitalisation. Although further investigation is required, our results suggest that expanding the availability of SPC services to provide more equitable access could enable patients to spend more time at their usual place of residence, reduce pressure on inpatient services and facilitate death at home when that is preferred.

Dataset Information

Systematic review of conceptual and theoretical frameworks used in palliative care and end-of-life care research studies.

Background

Aim

Design

Data sources

Results

Conclusions

Publications

Systematic review of conceptual and theoretical frameworks used in palliative care and end-of-life care research studies.

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