scholarly journals Information needs of patients with chronic diseases and their relatives for web-based advance care planning: a qualitative interview study

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Doris van der Smissen ◽  
Judith A. C. Rietjens ◽  
Lisette van Gemert-Pijnen ◽  
Sandra van Dulmen ◽  
Agnes van der Heide ◽  
...  
Keyword(s):  
Chronic Diseases ◽  
Advance Care Planning ◽  
Information Needs ◽  
Care Planning ◽  
Web Based ◽  
Disease Trajectory ◽  
Search Terms ◽  
Practical Support ◽  
Advance Care ◽  
Search For Information

Abstract Background Advance care planning (ACP) enables persons to identify preferences for future treatment and care, and to discuss, record and review these preferences. However, the uptake of ACP among patients with chronic diseases is relatively low. Web-based ACP programs can support patients and their relatives in ACP. However, information needs of patients and their relatives for ACP are unknown. The aim of this study is to explore information needs of patients with chronic disease and their relatives for web-based ACP. Methods We conducted semi-structured interviews with patients with chronic diseases and relatives at their home or at the study center. In three cases, the patient and relative were paired since they preferred to be interviewed together. We asked about information they would search for when to start with ACP, where they would search for information, what search terms they would use on the Internet, and what content and information they would consider important on an ACP website. The interviewer asked participants to clarify their responses during the interview. We used thematic analysis to analyze the interviewees’ responses. Results We interviewed nine patients with different chronic diseases including amyotrophic lateral sclerosis (ALS), multiple sclerosis (MS), chronic obstructive pulmonary disease (COPD) and kidney diseases, and seven relatives, namely partners or (adult) children. The interviewees were aged 24 to 80 years, nine were female and seven were male. Both patients with a chronic disease and relatives mentioned comparable information needs. Many interviewees indicated they would use the Internet to search for information about ACP. Mentioned search terms were “advance care planning”, “treatment plan”, “disease trajectory” and names of patient associations. Information needs concerned their disease trajectory and quality of life, medical treatment decisions, practical support in arranging care, the concept of ACP and guidance in ACP, communication of treatment and care preferences, peer support of others with chronic diseases, and information for relatives. Many appreciated encouragement of their healthcare providers to take a pro-active role in ACP. Conclusions We conclude that information needs for ACP included guidance in ACP, support in making decisions about medical treatment, and practical support in arranging care. We recommend adapting web-based ACP information to the information needs of patients and their relatives to increase its findability, uptake and usefulness.

Advance care planning for patients with COVID-19: a communication guide

2021 ◽  
pp. 1-6
Author(s):  
Natasha Palipane ◽  
Abi Ponnampalampillai ◽  
Srirupa Gupta
Keyword(s):  
Advance Care Planning ◽  
Symptom Control ◽  
Patient Choice ◽  
High Morbidity ◽  
Care Planning ◽  
Goals Of Care ◽  
Disease Trajectory ◽  
Improve Symptom ◽  
Inappropriate Admissions ◽  
Advance Care

In view of the high morbidity and mortality associated with COVID-19, early and honest conversations with patients about goals of care are vital. Advance care planning in its traditional manner may be difficult to achieve given the unpredictability of the disease trajectory. Despite this, it is crucial that patients' care wishes are explored as this will help prevent inappropriate admissions to hospital and to critical care, improve symptom control and advocate for patient choice. This article provides practical tips on how to translate decisions around treatment escalation plans into conversations, both face-to-face and over the phone, in a sensitive and compassionate manner. Care planning conversations for patients with COVID-19 should be individualised and actively involve the patient. Focusing on goals of care rather than ceilings of treatment can help to alleviate anxiety around these conversations and will remind patients that their care will never cease. Using a framework such as the ‘SPIKES’ mnemonic can help to structure this conversation. Verbally conveying empathy will be key, particularly when wearing personal protective equipment or speaking to relatives over the phone. It is also important to make time to recognise your own emotions during and/or after these conversations.

scholarly journals Efficacy of Normalisation of Advance Care Planning (NACP) for people with chronic diseases in hospital and community settings: a quasi-experimental study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Sarah Jeong ◽  
Peter Cleasby ◽  
Se Ok Ohr ◽  
Tomiko Barrett ◽  
Ryan Davey ◽  
...  
Keyword(s):  
Experimental Study ◽  
Chronic Diseases ◽  
Advance Care Planning ◽  
Fixed Effects ◽  
Care Planning ◽  
Community Settings ◽  
Link Type ◽  
Quasi Experimental ◽  
Advance Care ◽  
And Control

Abstract Background Advance Care Planning (ACP) has emerged to improve end-of-life processes and experiences. However, the available evidence presents the gloomy picture of increasing number of older people living with chronic diseases and the mismatch between their preferences for and the actual place of death. The study aimed to investigate the efficacy of normalisation of an Advance Care Planning (NACP) service delivered by specially trained Registered Nurses (RNs) in hospital and community settings. Methods A quasi-experimental study was conducted involving 16 sites (eight hospital and eight community sites) in Australia. Patients who were aged ≥18 years, who had at least one of nine chronic conditions, and who did not have an Advance Care Directive (ACD) were offered the NACP service. ACP was normalised as part of routine service on admission. The intervention, NACP, was a series of facilitated conversations about the components of ACP. The primary outcomes which included the completion of ACDs, and/or appointment of an Enduring Guardian (EG), were assessed in both intervention and control sites at pre and post intervention stages. Numbers of patients who completed an ACD or appointed an EG were described by count (percentage). ACD completion was compared between intervention and control sites using a logistic mixed effects regression model. The model includes fixed effects for treatment group, period, and their interaction, as well as random site level intercepts. Secondary model included potentially confounding variables as covariates, including age, sex and chronic diseases. Results The prevalence of legally binding ACDs in intervention sites has increased from five to 85 (from 0.85% in pre to 17.6% in post), whereas it has slightly decreased from five to 2 (from 1.2% in pre and to 0.49% in post) in control sites (the difference in these changes being statistically significant p < 0.001). ACD completion rate was 3.6% (n = 4) in LHD1 and 1.2% (n = 3) in LHD2 in hospital whereas it was 53% (n = 26) in LHD1 and 80% (n = 52) in LHD2 in community. Conclusions The study demonstrated that NACP service delivered by ACP RNs was effective in increasing completion of ACDs (interaction odds ratio = 50) and was more effective in community than hospital settings. Involvement of various healthcare professionals are warranted to ensure concordance of care. Trial registration The study was retrospectively registered with the Australian New Zealand Clinical Trials Registry (Trial ID: ACTRN12618001627246) on 03/10/2018. The URL of the trial registry record http://www.anzctr.org.au/trial/MyTrial.aspx

scholarly journals Effect of advance care planning discussions with trained nurses in older adults with chronic diseases in Japan

2021 ◽  
Vol 0 (0) ◽  
pp. 0-0
Author(s):  
Hiroko Okada ◽  
Takahiro Kiuchi ◽  
Tsuyoshi Okuhara ◽  
Yoshiyuki Kizawa
Keyword(s):  
Older Adults ◽  
Chronic Diseases ◽  
Advance Care Planning ◽  
Care Planning ◽  
Advance Care

scholarly journals Prevalence of Advance Care Planning Practices Among People with Chronic Diseases in Hospital and Community Settings: A Quasi-Experimental Design

2020 ◽  
Author(s):  
Sarah Yeun-Sim Jeong ◽  
Tomiko Barrett ◽  
Se Ok Ohr ◽  
Peter Cleasby ◽  
Ryan Davey
Keyword(s):  
Health Care ◽  
Chronic Diseases ◽  
Advance Care Planning ◽  
Healthcare Professionals ◽  
Community Setting ◽  
Care Planning ◽  
Community Settings ◽  
Future Health ◽  
Number Of Patients ◽  
Advance Care

Abstract Background: Advance Care Planning (ACP) enables healthcare professionals to embrace the important process where patients think about their values in life and goals for health care, and discuss their future health care preferences with family members for a time when they are not able to make health care decisions. Despite the promotion of ACP last two decades, and well-known benefits of ACP and a written Advance Care Directive (ACD), they are still underutilised in Australia and across the world. Previous studies have provided some insights, however, an uptake of ACP and prevalence of ACDs in community setting is rarely reported.Methods: The aim of this study was to determine the uptake of ACP and prevalence of ACDs among people with chronic diseases in hospital and community settings. A retrospective medical record audit of eligible patients looking for evidence of ACP was conducted in 16 research sites (eight intervention and eight control) in hospital and community care settings. Participants included those who were admitted to one of the research sites, and who were aged 18 years and over with at least one of nine nominated chronic diseases. The primary outcome measures included the number of patients with evidence of ACP through the following practices: completion of an ACD, appointment of an Enduring Guardian (EG), or completion of a resuscitation plan. Results: The overall prevalence of ACD was 2.8% (n=28) out of 1006 audited records, and only 10 of them were legally binding. The number of EGs legally appointed was 39 (3.9%) across the sites. A total of 151 (15.4%) resuscitation plans were found across the eight hospital sites. 95% (n=144) of the resuscitation plans advised ‘Not-for-resuscitation’. Conclusions: The uptake of ACP is very low. Current medical recording system reveals the challenges in ACP lie in the process of storage, access and execution of the ACDs. Given that having an ACD or EG in place is only useful if the treating physician knows how and where to access the information, it has implications for policy, information system, and healthcare professionals’ education. Trial registration: The study was retrospectively registered with the Australian New Zealand Clinical Trials Registry (Trial ID: ACTRN12618001627246). The URL of the trial registry record http://www.anzctr.org.au/trial/MyTrial.aspx

Evaluation of an advance care planning web-based resource: applicability for cancer treatment patients

2017 ◽  
Vol 26 (3) ◽  
pp. 853-860 ◽  
Author(s):  
Martha A. Cresswell ◽  
Carole A. Robinson ◽  
Gillian Fyles ◽  
Joan L. Bottorff ◽  
Rebecca Sudore
Keyword(s):  
Cancer Treatment ◽  
Advance Care Planning ◽  
Care Planning ◽  
Web Based ◽  
Advance Care

scholarly journals The Feasibility and Effectiveness of Web-Based Advance Care Planning Programs: Scoping Review

10.2196/15578 ◽  
2020 ◽  
Vol 22 (3) ◽  
pp. e15578 ◽  
Author(s):  
Doris van der Smissen ◽  
Anouk Overbeek ◽  
Sandra van Dulmen ◽  
Lisette van Gemert-Pijnen ◽  
Agnes van der Heide ◽  
...  
Keyword(s):  
United States ◽  
Health Care ◽  
Advance Care Planning ◽  
Health Care Professionals ◽  
The United States ◽  
Care Planning ◽  
Web Based ◽  
Future Care ◽  
Advance Care ◽  
Study Designs

Background Advance care planning (ACP) is a process with the overall aim to enhance care in concordance with patients’ preferences. Key elements of ACP are to enable persons to define goals and preferences for future medical treatment and care, to discuss these with family and health care professionals, and to document and review these if appropriate. ACP is usually conducted through personal conversations between a health care professional, a patient, and—if appropriate—family members. Although Web-based ACP programs have the potential to support patients in ACP, their effectiveness is unknown. Objective This study aimed to assess the feasibility and effectiveness of Web-based, interactive, and person-centered ACP programs. Methods We systematically searched for quantitative and qualitative studies evaluating Web-based, interactive, and person-centered ACP programs in seven databases including EMBASE, Web of Science, Cochrane Central and Google Scholar. Data on the characteristics of the ACP programs’ content (using a predefined list of 10 key elements of ACP), feasibility, and effectiveness were extracted using a predesigned form. Results Of 3434 titles and abstracts, 27 studies met the inclusion criteria, evaluating 11 Web-based ACP programs—10 were developed in the United States and one in Ireland. Studied populations ranged from healthy adults to patients with serious conditions. Programs typically contained the exploration of goals and values (8 programs), exploration of preferences for treatment and care (11 programs), guidance for communication about these preferences with health care professionals or relatives (10 programs), and the possibility to generate a document in which preferences can be recorded (8 programs). Reportedly, participants were satisfied with the ACP programs (11/11 studies), considering them as easy to use (8/8 studies) and not burdensome (7/8 studies). Designs of 13 studies allowed evaluating the effectiveness of five programs. They showed that ACP programs significantly increased ACP knowledge (8/8 studies), improved communication between patients and their relatives or health care professionals (6/6 studies), increased ACP documentation (6/6 studies), and improved concordance between care as preferred by the patients and the decisions of clinicians and health care representatives (2/3 studies). Conclusions Web-based, interactive, and person-centered ACP programs were mainly developed and evaluated in the United States. They contained the key elements of ACP, such as discussing and documenting goals and preferences for future care. As participants considered programs as easy to use and not burdensome, they appeared to be feasible. Among the 13 studies that measured the effectiveness of programs, improvement in ACP knowledge, communication, and documentation was reported. The concordance between preferred and received care is yet understudied. Studies with high-quality study designs in different health care settings are warranted to further establish the feasibility and effectiveness of Web-based ACP programs.

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