Patient Views on Advance Care Planning in Cirrhosis: A Qualitative Analysis
Aim. To investigate patient experiences and perceptions of advance care planning (ACP) process in cirrhosis. Methods. Purposive sampling was used to identify and recruit participants (N = 17) from discrete patient groups: compensated with no prior decompensation, decompensated and not yet listed for...
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| Format: | Article |
| Language: | English |
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Wiley
2018-01-01
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| Series: | Canadian Journal of Gastroenterology and Hepatology |
| Online Access: | http://dx.doi.org/10.1155/2018/4040518 |
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| _version_ | 1849396338831130624 |
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| author | Michelle Carbonneau Tracy Davyduke Jude Spiers Amanda Brisebois Kathleen Ismond Puneeta Tandon |
| author_facet | Michelle Carbonneau Tracy Davyduke Jude Spiers Amanda Brisebois Kathleen Ismond Puneeta Tandon |
| author_sort | Michelle Carbonneau |
| collection | DOAJ |
| description | Aim. To investigate patient experiences and perceptions of advance care planning (ACP) process in cirrhosis. Methods. Purposive sampling was used to identify and recruit participants (N = 17) from discrete patient groups: compensated with no prior decompensation, decompensated and not yet listed for transplant, transplant wait listed, medical contraindications for transplant, and low socioeconomic status. Review and discussion of local ACP videos, documents, and experiences with ACP occurred in two individual interviews and four focus groups. Data were analyzed using inductive content analysis including iterative processes of open coding, categorization, and abstraction. Results. Three overarching categories emerged: (1) lack of understanding about disease trajectories and ACP processes, (2) roles of alternate decision makers, and (3) preferences for receiving ACP information. Most patients desired advanced care-planning conversations before the onset of decompensation (specifically hepatic encephalopathy) with a care provider with whom they had a trusting, preexisting relationship. Involvement of the alternate decision makers was of critical importance to participants, as was the use of direct, easy to understand patient education tools that address practical issues. Conclusion. Our findings support the need for early advance care planning in the outpatient setting. Outpatient clinicians may play a key role in facilitating these discussions. |
| format | Article |
| id | doaj-art-b46da1d528fa47548651feb76981e9eb |
| institution | Kabale University |
| issn | 2291-2789 2291-2797 |
| language | English |
| publishDate | 2018-01-01 |
| publisher | Wiley |
| record_format | Article |
| series | Canadian Journal of Gastroenterology and Hepatology |
| spelling | doaj-art-b46da1d528fa47548651feb76981e9eb2025-08-20T03:39:22ZengWileyCanadian Journal of Gastroenterology and Hepatology2291-27892291-27972018-01-01201810.1155/2018/40405184040518Patient Views on Advance Care Planning in Cirrhosis: A Qualitative AnalysisMichelle Carbonneau0Tracy Davyduke1Jude Spiers2Amanda Brisebois3Kathleen Ismond4Puneeta Tandon5Alberta Health Services, 8440 112 Street, Edmonton, AB, T6G 2B7, CanadaAlberta Health Services, 8440 112 Street, Edmonton, AB, T6G 2B7, CanadaUniversity of Alberta, Faculty of Nursing, 3-141 Edmonton Clinic Health Academy (ECHA) 11405 87 Avenue, Edmonton, AB, T6G 1C9, CanadaUniversity of Alberta, Faculty of Medicine, 2J2.00 Walter C Mackenzie Health Sciences Centre, 8440 112 St., Edmonton, AB, T6G 2R7, CanadaUniversity of Alberta, Faculty of Medicine, 2J2.00 Walter C Mackenzie Health Sciences Centre, 8440 112 St., Edmonton, AB, T6G 2R7, CanadaCirrhosis Care Clinic, 8540 112 Street, Zeidler Ledcor Centre, Edmonton, AB, T6G 2X8, CanadaAim. To investigate patient experiences and perceptions of advance care planning (ACP) process in cirrhosis. Methods. Purposive sampling was used to identify and recruit participants (N = 17) from discrete patient groups: compensated with no prior decompensation, decompensated and not yet listed for transplant, transplant wait listed, medical contraindications for transplant, and low socioeconomic status. Review and discussion of local ACP videos, documents, and experiences with ACP occurred in two individual interviews and four focus groups. Data were analyzed using inductive content analysis including iterative processes of open coding, categorization, and abstraction. Results. Three overarching categories emerged: (1) lack of understanding about disease trajectories and ACP processes, (2) roles of alternate decision makers, and (3) preferences for receiving ACP information. Most patients desired advanced care-planning conversations before the onset of decompensation (specifically hepatic encephalopathy) with a care provider with whom they had a trusting, preexisting relationship. Involvement of the alternate decision makers was of critical importance to participants, as was the use of direct, easy to understand patient education tools that address practical issues. Conclusion. Our findings support the need for early advance care planning in the outpatient setting. Outpatient clinicians may play a key role in facilitating these discussions.http://dx.doi.org/10.1155/2018/4040518 |
| spellingShingle | Michelle Carbonneau Tracy Davyduke Jude Spiers Amanda Brisebois Kathleen Ismond Puneeta Tandon Patient Views on Advance Care Planning in Cirrhosis: A Qualitative Analysis Canadian Journal of Gastroenterology and Hepatology |
| title | Patient Views on Advance Care Planning in Cirrhosis: A Qualitative Analysis |
| title_full | Patient Views on Advance Care Planning in Cirrhosis: A Qualitative Analysis |
| title_fullStr | Patient Views on Advance Care Planning in Cirrhosis: A Qualitative Analysis |
| title_full_unstemmed | Patient Views on Advance Care Planning in Cirrhosis: A Qualitative Analysis |
| title_short | Patient Views on Advance Care Planning in Cirrhosis: A Qualitative Analysis |
| title_sort | patient views on advance care planning in cirrhosis a qualitative analysis |
| url | http://dx.doi.org/10.1155/2018/4040518 |
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