Is This ACP? A Focus Group Study of Patient Experiences of Advance Care Planning

2022 ◽  
Author(s):  
Amanda J. Reich ◽  
Stephen Perez ◽  
Priscilla Gazarian ◽  
Noah D’Arcangelo ◽  
Kristina Gonzales ◽  
...  
Keyword(s):  
Focus Group ◽  
Advance Care Planning ◽  
Patient Experiences ◽  
Care Planning ◽  
Focus Group Study ◽  
Advance Care

scholarly journals Barriers to Advance Care Planning in Cancer, Heart Failure and Dementia Patients: A Focus Group Study on General Practitioners' Views and Experiences

PLoS ONE ◽  
2014 ◽  
Vol 9 (1) ◽  
pp. e84905 ◽  
Author(s):  
Aline De Vleminck ◽  
Koen Pardon ◽  
Kim Beernaert ◽  
Reginald Deschepper ◽  
Dirk Houttekier ◽  
...  
Keyword(s):  
Heart Failure ◽  
Focus Group ◽  
General Practitioners ◽  
Advance Care Planning ◽  
Care Planning ◽  
Focus Group Study ◽  
Dementia Patients ◽  
Advance Care

scholarly journals P26 Advance care planning in swiss nursing homes: results of a focus group study

2019 ◽  
Author(s):  
K Hecht ◽  
I Karzig-Roduner ◽  
T Otto ◽  
T Krones ◽  
B Loupatatzis
Keyword(s):  
Nursing Homes ◽  
Focus Group ◽  
Advance Care Planning ◽  
Care Planning ◽  
Focus Group Study ◽  
Advance Care

Acceptability of an advance care planning interview schedule: a focus group study

2007 ◽  
Vol 21 (1) ◽  
pp. 23-28 ◽  
Author(s):  
Kelly Barnes ◽  
Louise Jones ◽  
Adrian Tookman ◽  
Michael King
Keyword(s):  
Focus Group ◽  
Advance Care Planning ◽  
Care Planning ◽  
Focus Group Study ◽  
Interview Schedule ◽  
Advance Care

scholarly journals Trained facilitators’ experiences with structured advance care planning conversations in oncology: an international focus group study within the ACTION trial

BMC Cancer ◽  
2019 ◽  
Vol 19 (1) ◽  
Author(s):  
M. Zwakman ◽  
◽  
K. Pollock ◽  
F. Bulli ◽  
G. Caswell ◽  
...  
Keyword(s):  
Focus Group ◽  
Focus Groups ◽  
Advance Care Planning ◽  
Health Care Professionals ◽  
Controlled Trial ◽  
Phase Iii ◽  
Care Planning ◽  
Focus Group Study ◽  
Training Support ◽  
Advance Care

Abstract Background In oncology, Health Care Professionals often experience conducting Advance Care Planning (ACP) conversations as difficult and are hesitant to start them. A structured approach could help to overcome this. In the ACTION trial, a Phase III multi-center cluster-randomized clinical trial in six European countries (Belgium, Denmark, Italy, the Netherlands, Slovenia, United Kingdom), patients with advanced lung or colorectal cancer are invited to have one or two structured ACP conversations with a trained facilitator. It is unclear how trained facilitators experience conducting structured ACP conversations. This study aims to understand how facilitators experience delivering the ACTION Respecting Choices (RC) ACP conversation. Methods A qualitative study involving focus groups with RC facilitators. Focus group interviews were recorded, transcribed, anonymized, translated into English, and thematically analysed, supported by NVivo 11. The international research team was involved in data analysis from initial coding and discussion towards final themes. Results Seven focus groups were conducted, involving 28 of in total 39 trained facilitators, with different professional backgrounds from all participating countries. Alongside some cultural differences, six themes were identified. These reflect that most facilitators welcomed the opportunity to participate in the ACTION trial, seeing it as a means of learning new skills in an important area. The RC script was seen as supportive to ask questions, including those perceived as difficult to ask, but was also experienced as a barrier to a spontaneous conversation. Facilitators noticed that most patients were positive about their ACTION RC ACP conversation, which had prompted them to become aware of their wishes and to share these with others. The facilitators observed that it took patients substantial effort to have these conversations. In response, facilitators took responsibility for enabling patients to experience a conversation from which they could benefit. Facilitators emphasized the need for training, support and advanced communication skills to be able to work with the script. Conclusions Facilitators experienced benefits and challenges in conducting scripted ACP conversations. They mentioned the importance of being skilled and experienced in carrying out ACP conversations in order to be able to explore the patients’ preferences while staying attuned to patients’ needs. Trial registration International Standard Randomised Controlled Trial Number registry 63110516 (ISRCTN63110516) per 10/3/2014.

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.

scholarly journals Feasibility and acceptability of introducing advance care planning on a thoracic medicine inpatient ward: an exploratory mixed method study

2020 ◽  
Vol 7 (1) ◽  
pp. e000485
Author(s):  
Nina Elisabeth Hjorth ◽  
Margrethe Aase Schaufel ◽  
Katrin Ruth Sigurdardottir ◽  
Dagny R Faksvåg Haugen
Keyword(s):  
Focus Group ◽  
Advance Care Planning ◽  
Symptom Control ◽  
Care Planning ◽  
Management Support ◽  
Focus Group Interviews ◽  
Inpatient Ward ◽  
Advance Care ◽  
Patient Values ◽  
Group Interviews

Background and aimsAdvance care planning (ACP) is communication about wishes and preferences for end-of-life care. ACP is not routinely used in any Norwegian hospitals. We performed a pilot study (2014–2017) introducing ACP on a thoracic medicine ward in Norway. The aims of this study were to explore which topics patients discussed during ACP conversations and to assess how patients, relatives and clinicians experienced the acceptability and feasibility of performing ACP.MethodsConversations were led by a study nurse or physician using a semistructured guide, encouraging patients to talk freely. Each conversation was summarised in a report in the patient’s medical record. At the end of the pilot period, clinicians discussed their experiences in focus group interviews. Reports and transcribed interviews were analysed using systematic text condensation.ResultsFifty-one patients participated in ACP conversations (41–86 years; 9 COPD, 41 lung cancer, 1 lung fibrosis; 11 women); 18 were accompanied by a relative. Four themes emerged: (1) disturbing symptoms, (2) existential topics, (3) care planning and (4) important relationships. All participants appreciated the conversations. Clinicians (1 physician and 7 nurses) participated in two focus group interviews. Reports from ACP conversations revealed patient values previously unknown to clinicians; important information was passed on to primary care. Fearing they would deprive patients of hope, clinicians acted as gatekeepers for recruitment. Although they reported barriers during recruitment, many clinicians saw ACP as pertinent and called for time and skills to integrate it into their daily clinical practice.ConclusionsPatients, relatives and clinicians showed a positive attitude towards ACP. Focusing on present and future symptom control may be an acceptable way to introduce ACP. Important aspects for implementing ACP in this patient group are management support, education, training, feasible routines and allocated time to perform the conversations.

scholarly journals Implantable cardioverter defibrillator deactivation and advance care planning: a focus group study

Heart ◽  
2019 ◽  
pp. heartjnl-2019-315721 ◽  
Author(s):  
Rik Stoevelaar ◽  
Arianne Brinkman-Stoppelenburg ◽  
Anne Geert van Driel ◽  
Rozemarijn L van Bruchem-Visser ◽  
Dominic AMJ Theuns ◽  
...  
Keyword(s):  
Focus Groups ◽  
Implantable Cardioverter Defibrillator ◽  
Advance Care Planning ◽  
Comparative Method ◽  
Disease Stage ◽  
Care Planning ◽  
Best Interest ◽  
Focus Group Study ◽  
Cardioverter Defibrillator ◽  
Advance Care

ObjectiveImplantable cardioverter defibrillators can treat life-threatening arrhythmias, but may negatively influence the last phase of life if not deactivated. Advance care planning conversations can prepare patients for future decision-making about implantable cardioverter defibrillator deactivation. This study aimed at gaining insight in the experiences of patients with advance care planning conversations about implantable cardioverter defibrillator deactivation.MethodsIn this qualitative study, we held five focus groups with 41 patients in total. Focus groups were audio-recorded and transcribed. Transcripts were analysed thematically, using the constant comparative method, whereby themes emerging from the data are compared with previously emerged themes.ResultsMost patients could imagine deciding to have their implantable cardioverter defibrillator deactivated, for instance because the benefits of an active device no longer outweigh the harm of unwanted shocks, when having another life-limiting illness, or when relatives would think this would be in their best interest. Some patients expressed a need for advance care planning conversations with a healthcare professional about deactivation, but few had had these. Others did not, saying they solely focused on living. Some patients were hesitant to record their preferences about deactivation in advance care directives, because they were unsure whether their current preferences would reflect future preferences.ConclusionsAlthough patients expressed a need for more information, advance care planning conversations about implantable cardioverter defibrillator deactivation seemed to be uncommon. Deactivation should be more frequently addressed by healthcare professionals, tailored to the disease stage of the patient and readiness to discuss this topic.

Sign in / Sign up

Export Citation Format

Share Document