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.

scholarly journals Views of advanced cancer patients, families, and oncologists on initiating and engaging in advance care planning: a qualitative study

2020 ◽  
Vol 19 (1) ◽  
Author(s):  
J. T. Toguri ◽  
L. Grant-Nunn ◽  
R. Urquhart
Keyword(s):  
Cancer Patients ◽  
Advanced Cancer ◽  
Advance Care Planning ◽  
Family Members ◽  
Formal Training ◽  
Team Approach ◽  
Care Planning ◽  
Advanced Cancer Patients ◽  
Advance Care ◽  
Services And Supports

Abstract Background Advance care planning (ACP) is a process by which patients reflect upon their goals, values and beliefs to allow them to make decisions about their future medical treatment that align with their goals and values, improving patient-centered care. Despite this, ACP is underutilized and is reported as one of the most difficult processes of oncology. We sought to: 1) explore patients’ and families’ understanding, experience and reflections on ACP, as well as what they need from their physicians during the process; 2) explore physicians’ views of ACP, including their experiences with initiating ACP and views on ACP training. Methods This was a qualitative descriptive study in Nova Scotia, Canada with oncologists, advanced cancer out-patients and their family members. Semi-structured interviews with advanced cancer out-patients and their family members (n = 4 patients, 4 family members) and oncologists (n = 10) were conducted; each participant was recruited separately. Data were analyzed using constant comparative analysis, which entailed coding, categorizing, and identifying themes recurrent across the datasets. Results Themes were identified from the patient / family and oncologist groups, four and five respectively. Themes from patients / families included: 1) positive attitudes towards ACP; 2) healthcare professionals (HCPs) lack an understanding of patients’ and families’ informational needs during the ACP process; 3) limited access to services and supports; and 4) poor communication between HCPs. Themes from oncologists included: 1) initiation of ACP discussions; 2) navigating patient-family dynamics; 3) limited formal training in ACP; 4) ACP requires a team approach; and 5) lack of coordinated systems hinders ACP. Conclusions Stakeholders believe ACP for advanced cancer patients is important. Patients and families desire earlier and more in-depth discussion of ACP, additional services and supports, and improved communication between their HCPs. In the absence of formal training or guidance, oncologists have used clinical acumen to initiate ACP and a collaborative healthcare team approach.

scholarly journals An examination of Latino-advanced cancer patients' and their informal caregivers' preferences for communication about advance care planning: A qualitative study

2019 ◽  
Vol 18 (3) ◽  
pp. 277-284
Author(s):  
Megan Johnson Shen ◽  
Cyndi Gonzalez ◽  
Benjamin Leach ◽  
Paul K. Maciejewski ◽  
Elissa Kozlov ◽  
...  
Keyword(s):  
Cancer Patients ◽  
Advanced Cancer ◽  
Advance Care Planning ◽  
Religious Beliefs ◽  
Family Members ◽  
Care Planning ◽  
Advanced Cancer Patients ◽  
Advance Care ◽  
Eol Care ◽  
Language For Learning

AbstractObjectivesLatino-advanced cancer patients engage in advance care planning (ACP) at lower rates than non-Latino patients. The goal of the present study was to understand patients' and caregivers' preferred methods of communicating about ACP.MethodsPatients and caregivers were interviewed about cultural, religious, and familial beliefs that influence engagement in ACP and preferences for ACP communication.ResultsFindings highlighted that Latino patients respect doctors' medical advice, prefer the involvement of family members in ACP discussions with doctors, hold optimistic religious beliefs (e.g., belief in miracles) that hinder ACP discussions, and prefer culturally competent approaches, such as using their native language, for learning how to discuss end-of-life (EoL) care preferences.Significance of resultsKey cultural, religious, and familial beliefs and dynamics influence Latino engagement in ACP. Patients prefer a family-centered, physician informed approach to discussing ACP with consideration and incorporation of their religious medical beliefs about EoL care. Promising targets for improving the communication of and engagement in ACP include integrating cultural and religious beliefs in ACP discussions, providing information about ACP from the physician, involving family members in ACP discussions and decision-making, and giving instructions on how to engage in ACP discussions.

scholarly journals Views of advanced cancer patients, families, and oncologists on initiating and engaging in advance care planning: a qualitative study

2020 ◽  
Author(s):  
James Thomas Toguri ◽  
Lindsay Grant-Nunn ◽  
Robin Urquhart
Keyword(s):  
Cancer Patients ◽  
Advanced Cancer ◽  
Advance Care Planning ◽  
Family Members ◽  
Formal Training ◽  
Team Approach ◽  
Care Planning ◽  
Advanced Cancer Patients ◽  
Advance Care ◽  
Services And Supports

Abstract Background: Advance care planning (ACP) is a process by which patients reflect upon their goals, values and beliefs to allow them to make decisions about their future medical treatment that align with their goals and values, improving patient-centered care. Despite this, ACP is underutilized and is reported as one of the most difficult processes of oncology. We sought to: 1) explore patients’ and families’ understanding, experience and reflections on ACP, as well as what they need from their physicians during the process; 2) explore physicians’ views of ACP, including their experiences with initiating ACP and views on ACP training. Methods: This was a qualitative descriptive study in Nova Scotia, Canada with oncologists, advanced cancer out-patients and their family members. Semi-structured interviews with advanced cancer out-patients and their family members (n=4 patients, 4 family members) and oncologists (n=10) were conducted; each participant was recruited separately. Data were analyzed using constant comparative analysis, which entailed coding, categorizing, and identifying themes recurrent across the datasets. Results: Themes were identified from the patient / family and oncologist groups, four and five respectively. Themes from patients / families included: 1) positive attitudes towards ACP; 2) healthcare professionals (HCPs) lack an understanding of patients’ and families’ informational needs during the ACP process; 3) limited access to services and supports; and 4) poor communication between HCPs. Themes from oncologists included: 1) initiation of ACP discussions; 2) navigating patient-family dynamics; 3) limited formal training in ACP; 4) ACP requires a team approach; and 5) lack of coordinated systems hinders ACP. Conclusions: Stakeholders believe ACP for advanced cancer patients is important. Patients and families desire earlier and more in-depth discussion of ACP, additional services and supports, and improved communication between their HCPs. In the absence of formal training or guidance, oncologists have used clinical acumen to initiate ACP and a collaborative healthcare team approach.

scholarly journals Advance Care Planning Among Patients With Advanced Cancer

2019 ◽  
Vol 15 (1) ◽  
pp. e65-e73 ◽  
Author(s):  
Jane R. Schubart ◽  
Benjamin H. Levi ◽  
Megan M. Bain ◽  
Elana Farace ◽  
Michael J. Green
Keyword(s):  
End Of Life ◽  
Advanced Cancer ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Decision Aid ◽  
Family Members ◽  
Care Planning ◽  
Life Care ◽  
Physician Awareness ◽  
Advance Care

Purpose: Advance directives (AD) have been heralded as vehicles to promote patient autonomy and have been decried as ineffective. Efforts to improve advance care planning (ACP) and AD documents are wide ranging but have not been prospectively studied. Materials and Methods: In an institutional review board–approved, single-blind, randomized, controlled trial, we compared an interactive, educational ACP decision aid to standard ACP among patients with advanced cancer. We hypothesized that use of the decision aid would increase physician awareness of patients’ health care wishes and increase physician adherence to patients’ end-of-life wishes compared with standard ACP. Results: A total of 200 patients were randomly assigned to two study arms. We analyzed data from medical records and interviews with physicians and family members for 121 patients who died by August 2016. No differences in physician awareness or adherence were found between the ACP decision aid and standard ACP groups. End-of-life treatment wishes and discussion of wishes were documented for 70% and 64% of the patients, respectively, but only 35% had an actual AD in the medical record. According to family members, end-of-life care was consistent with the patients’ stated wishes 94% of the time. Similarly, according to physicians, it was consistent for 98%. However, according to AD documents, delivered care was consistent with desired care in only 65%. Considerably fewer patients than predicted died, and data from physicians were difficult to obtain. Conclusion: ACP type did not influence documentation of patient wishes or end-of-life care received. Future prospective studies must account for challenges in prognostication and point-of-care data collection at the end of life.

scholarly journals Views of advanced cancer patients, families, and oncologists on initiating and engaging in advance care planning: a qualitative study

2020 ◽  
Author(s):  
James Thomas Toguri ◽  
Lindsay Grant-Nunn ◽  
Robin Urquhart
Keyword(s):  
Cancer Patients ◽  
Advanced Cancer ◽  
Advance Care Planning ◽  
Family Members ◽  
Formal Training ◽  
Team Approach ◽  
Care Planning ◽  
Advanced Cancer Patients ◽  
Advance Care ◽  
Services And Supports

Abstract Background: Advance care planning (ACP) is a process by which patients reflect upon their goals, values and beliefs to allow them to make decisions about their future medical treatment that align with their goals and values, improving patient-centered care. Despite this, ACP is underutilized and is reported as one of the most difficult processes of oncology. Aims: To 1) explore patients’ and families’ understanding, experience and reflections on ACP, as well as what they need from their physicians during the process; 2) explore physicians’ views of ACP, including their experiences with initiating ACP and views on ACP training. Design and setting: Qualitative descriptive study in Nova Scotia, Canada with oncologists, advanced cancer out-patients and their family members. Methods: Semi-structured interviews with advanced cancer out-patients and their family members (n=4 patients, 4 family members) and oncologists (n=10) were conducted; each participant was recruited separately. Data were analyzed using constant comparative analysis, which entailed coding, categorizing, and identifying themes recurrent across the datasets. Results: Themes were identified from the patient / family and oncologist groups, four and five respectively. Themes from patients / families included: 1) positive attitudes towards ACP; 2) healthcare professionals (HCPs) lack an understanding of patients’ and families’ informational needs during the ACP process; 3) limited access to services and supports; and 4) poor communication between HCPs. Themes from oncologists included: 1) initiation of ACP discussions; 2) navigating patient-family dynamics; 3) limited formal training in ACP; 4) ACP requires a team approach; and 5) lack of coordinated systems hinders ACP. Conclusion: Stakeholders believe ACP for advanced cancer patients is important. Patients and families desire earlier and more in-depth discussion of ACP, additional services and supports, and improved communication between their HCPs. In the absence of formal training or guidance, oncologists have used clinical acumen to initiate ACP and a collaborative healthcare team approach.

scholarly journals Views of advanced cancer patients, families, and oncologists on initiating and engaging in advance care planning: a qualitative study

2020 ◽  
Author(s):  
James Thomas Toguri ◽  
Lindsay Grant-Nunn ◽  
Robin Urquhart
Keyword(s):  
Cancer Patients ◽  
Advanced Cancer ◽  
Advance Care Planning ◽  
Family Members ◽  
Formal Training ◽  
Team Approach ◽  
Care Planning ◽  
Advanced Cancer Patients ◽  
Advance Care ◽  
Services And Supports

Abstract Background: Advance care planning (ACP) is a process by which patients reflect upon their goals, values and beliefs to allow them to make decisions about their future medical treatment that align with their goals and values, improving patient-centered care. Despite this, ACP is underutilized and is reported as one of the most difficult processes of oncology. Aims: To 1) explore patients’ and families’ understanding, experience and reflections on ACP, as well as what they need from their physicians during the process; 2) explore physicians’ views of ACP, including their experiences with initiating ACP and views on ACP training. Design and setting: Qualitative descriptive study in Nova Scotia, Canada with oncologists, advanced cancer out-patients and their family members. Methods: Semi-structured interviews with advanced cancer out-patients and their family members (n=4 patients, 4 family members) and oncologists (n=10) were conducted; each participant was recruited separately. Data were analyzed using constant comparative analysis, which entailed coding, categorizing, and identifying themes recurrent across the datasets. Results: Themes were identified from the patient / family and oncologist groups, four and five respectively. Themes from patients / families included: 1) positive attitudes towards ACP; 2) healthcare professionals (HCPs) lack an understanding of patients’ and families’ informational needs during the ACP process; 3) limited access to services and supports; and 4) poor communication between HCPs. Themes from oncologists included: 1) initiation of ACP discussions; 2) navigating patient-family dynamics; 3) limited formal training in ACP; 4) ACP requires a team approach; and 5) lack of coordinated systems hinders ACP. Conclusion: Stakeholders believe ACP for advanced cancer patients is important. Patients and families desire earlier and more in-depth discussion of ACP, additional services and supports, and improved communication between their HCPs. In the absence of formal training or guidance, oncologists have used clinical acumen to initiate ACP and a collaborative healthcare team approach.

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 ‘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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