scholarly journals Feasibility and acceptability of a culturally adapted advance care planning intervention for people living with advanced cancer and their families: A mixed methods study

2020 ◽  
Vol 34 (5) ◽  
pp. 651-666 ◽  
Author(s):  
Cheng-Pei Lin ◽  
Catherine J Evans ◽  
Jonathan Koffman ◽  
Ping-Jen Chen ◽  
Ming-Feng Hou ◽  
...  
Keyword(s):  
Mixed Methods ◽  
Advanced Cancer ◽  
Advance Care Planning ◽  
Healthcare Professionals ◽  
Care Planning ◽  
Inpatient Hospital ◽  
Culturally Adapted ◽  
Advance Care ◽  
Planning Intervention

Background: Increasing evidence shows that advance care planning is effective in improving outcomes. However, its applicability and acceptability outside Western cultures remain unknown. Examination of relevant cultural adaptations is required prior to wider adoption. Aim: To examine the feasibility and acceptability of a culturally adapted advance care planning intervention in a Taiwanese inpatient hospital for advanced cancer patients, family members and healthcare professionals. Methods: A single-group, non-controlled, mixed methods feasibility study guided by a previously developed logic model. The culturally adapted advance care planning intervention represented a one-time intervention, comprising pre-advance care planning preparation and follow-up consultation. Qualitative interviews explored participants’ view on their involvement in the study. Patients’ medical records were examined to assess intervention fidelity. Findings from both data sets were integrated following analysis. Results: N = 29 participants ( n = 10 patients; n = 10 family members and n = 9 healthcare professionals) participated in the intervention, of who 28 completed follow-up interviews. Of the 10 advance care planning interventions delivered, most components ( n = 10/13) were met. Key contextual moderators influencing the intervention feasibility included: (1) resource constraints resulting in increased workload; (2) care decisions informed by relatives’ experiences of care; (3) the requirement for financial and policy support; and (4) a presumption for end-of-life care provision and surrogate decision-making. Six areas of intervention refinement were identified for future research. Conclusion: Implementing a culturally adapted advance care planning intervention in an inpatient hospital setting in Taiwan is possible. The participants reported the intervention to be acceptable. However, careful attention to the conceptual underpinning using local primary data is imperative for its success.

scholarly journals Family involvement in advance care planning for people living with advanced cancer: A systematic mixed-methods review

2022 ◽  
pp. 026921632110682
Author(s):  
Megumi Kishino ◽  
Clare Ellis-Smith ◽  
Oladayo Afolabi ◽  
Jonathan Koffman
Keyword(s):  
Mixed Methods ◽  
Advanced Cancer ◽  
Family Involvement ◽  
Advance Care Planning ◽  
Family Members ◽  
Logic Model ◽  
Future Research ◽  
Care Planning ◽  
Advance Care ◽  
Family Integrated

Background: Advance care planning is important for people with advanced cancer. Family involvement in advance care planning may be instrumental to achieving goal-concordant care since they frequently become surrogate decision-makers. Aim: To examine components, contexts, effects and linkages with intended outcomes of involving family members in advance care planning. Design: A mixed-methods systematic review, in which quantitative and qualitative data were extracted and synthesised using thematic synthesis leading to a logic model. Prospectively registered on PROSPERO (CRD42020208143). Data sources: Primary quantitative and qualitative research regarding family-involved advance care planning for people with advanced cancer were identified using Medline, Embase, PsycINFO and CINAHL from inception to September 2020. Quality appraisal was performed with ‘QualSyst’. Results: Fourteen articles were included. The synthesis identified perceptions of individuals and family members concerning family involvement in advance care planning and presents components for family-integrated advance care planning intervention. The logic model includes (i) addressing family members’ concerns and emotions and (ii) facilitating communication between individuals and family members which are distinctive when healthcare professionals engage with individuals as well as family members. Conclusions: This review provides a comprehensive understanding of family involvement in advance care planning and could inform its assessment and implementation in clinical practice. The number of included articles was limited. Therefore future research must focus on family integration and exploration of stakeholders’ perceptions to identify additional components and linkages between them within family-integrated advance care planning.

Disrupting end-of-life cancer care delivery: Results from the engagment of patients with advanced cancer trial.

2017 ◽  
Vol 35 (15_suppl) ◽  
pp. 6525-6525
Author(s):  
Manali I. Patel ◽  
Vandana Sundaram ◽  
Manisha Desai ◽  
VJ Periyakoil ◽  
James Kahn ◽  
...  
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Healthcare Utilization ◽  
Advanced Cancer ◽  
Advance Care Planning ◽  
Cancer Care ◽  
Care Planning ◽  
Patient Reported ◽  
Advance Care

6525 Background: Sustainable approaches to improve quality and safety of care of patients with advanced cancer while concurrently reducing costs is a growing national need. As part of the Veterans Administration Engagement of Patients with Advanced Cancer (EPAC) trial, we trained a lay health worker (LHW) to engage patients with stage 3 and 4 cancer in early advance care planning (ACP). The goal of this follow-up study was to examine the effect of the LHW intervention on patient-reported care experiences, healthcare utilization, and costs in the last 30 days of life for patients who died within 15 months of enrollment. Methods: We evaluated patient-reported experiences with decision-making, healthcare utilization, and total healthcare costs 30 days prior to death. A T-test was used to compare patient experiences with decision-making. To compare ED use and hospitalizations, we utilized an exact Poisson regression. A generalized linear model with gamma link-log function was used to compare total costs. The latter methods adjusted for length of follow-up. Results: In the 30 days prior to death, 60 patients died in each arm within 15 months of enrollment (difference not statistically significant). Patients in the intervention had significantly improved rates of ACP documentation (98% versus 18% p < 0.001), improved experiences with decision-making as measured by an index ranging from 0-5 with higher values representing more favorable experience (4.73 (SD 0.61) vs 4.15 (SD 1.02)) p < 0.001), higher utilization of hospice (77% vs 52%, p < 0.005), lower rates of any emergency department use (5% versus 45% p < 0.001) and any hospitalization (5% versus 43% p < 0.001), and significantly lower total costs of care ($1,048 versus $23,482 p < 0.001) compared to the patients randomized to the usual care arm. Conclusions: Integrating a LHW into oncology care to engage patients in early advance care planning resulted in significantly improved patient experience, decreased utilization and decreased total costs in the last month of life. LHWs may represent a sustainable resource to facilitate optimal patient-centered cancer care at the end-of-life. Clinical trial information: NCT02966509.

What influences patients’ decisions regarding palliative care in advance care planning discussions? Perspectives from a qualitative study conducted with advanced cancer patients, families and healthcare professionals

2019 ◽  
Vol 33 (10) ◽  
pp. 1299-1309 ◽  
Author(s):  
Cheng-Pei Lin ◽  
Catherine J Evans ◽  
Jonathan Koffman ◽  
Shuh-Jen Sheu ◽  
Su-Hsuan Hsu ◽  
...  
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Advance Care Planning ◽  
Filial Piety ◽  
Healthcare Professionals ◽  
Care Planning ◽  
Advanced Cancer Patients ◽  
Advance Care

Background: The concept of advance care planning is largely derived from Western countries. However, the decision-making process and drivers for choosing palliative care in non-Western cultures have received little attention. Aim: To explore the decision-making processes and drivers of receiving palliative care in advance care planning discussions from perspectives of advanced cancer patients, families and healthcare professionals in northern Taiwan. Method: Semi-structured qualitative interviews with advanced cancer patients, their families and healthcare professionals independently from inpatient oncology and hospice units. Thematic analysis with analytical rigour enhanced by dual coding and exploration of divergent views. Results: Forty-five participants were interviewed ( n = 15 from each group). Three main decision-making trajectories were identified: (1) ‘choose palliative care’ was associated with patients’ desire to reduce physical suffering from treatments, avoid being a burden to families and society, reduce futile treatments and donate organs to help others; (2) ‘decline palliative care’ was associated with patients weighing up perceived benefits to others as more important than benefits for themselves; and (3) ‘no opportunity to choose palliative care’ was associated with lack of opportunities to discuss potential benefits of palliative care, lack of staff skill in end-of-life communication, and cultural factors, notably filial piety. Conclusion: Choice for palliative care among advanced cancer patients in Taiwan is influenced by three decision-making trajectories. Opinions from families are highly influential, and patients often lack information on palliative care options. Strategies to facilitate decision-making require staff confidence in end-of-life discussions, working with the patients and their family while respecting the influence of filial piety.

scholarly journals ‘It’s almost superstition: If I don’t think about it, it won’t happen’. Public knowledge and attitudes towards advance care planning: A sequential mixed methods study

2021 ◽  
pp. 026921632110158
Author(s):  
Sonja McIlfatrick ◽  
Paul Slater ◽  
Olufikayo Bamidele ◽  
Deborah Muldrew ◽  
Esther Beck ◽  
...  
Keyword(s):  
Mixed Methods ◽  
Focus Group ◽  
Advance Care Planning ◽  
Public Awareness ◽  
Community Action ◽  
Care Plan ◽  
Care Planning ◽  
Knowledge And Attitudes ◽  
Sequential Mixed Methods ◽  
Advance Care

Background: Internationally, participation in advance care planning is low. Whilst a community action approach is advocated, what the public know and understand about advance care planning is unknown. Aim: To assess public awareness, knowledge and attitudes towards advance care planning and identify strategies to raise awareness within a public health framework. Design: Sequential mixed methods comprising a cross-sectional survey and focus group/interviews. Setting/participants: A random representative sample of adults from one region of the United Kingdom ( n = 1201; response rate 56%) completed a face-to-face survey. Twenty-five participants consented to an additional focus group/interview held in a secure accessible location or via telephone. Results: Most participants (78.7%) acknowledged the benefits of advance care planning conversations, however, two thirds did not want to think about advance care planning or find out more at present. Respondents were reluctant to broach advance care planning as it was linked to end of life care and funeral plans, and they did not wish to cause distress to their loved one. Respondents trusted their family to respect their wishes and they considered having an advance care plan in place would be of assistance in the future. Top-down leadership, normalisation, and increased education were identified as potential approaches to overcome barriers. Conclusions: Advance care planning was recognised as important despite limited awareness, lack of knowledge and misperceptions. Whilst a community action approach to enhance understanding and engagement was supported, a ‘one size fits all’ approach will not work; rather bespoke targeting is required with educational and media messaging aligned.

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