Coping and rehabilitation in alcoholic liver disease patients after hepatic encephalopathy – in interaction with professionals and relatives

Mikkelsen, Maria Rudkjær; Hendriksen, Carsten; Schiødt, Frank Vinholt; Rydahl-Hansen, Susan

doi:10.1111/jocn.13006

Cited by 5 publications

(6 citation statements)

References 27 publications

(30 reference statements)

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“…Tsai et al interviewed patients and asked them to rank‐order the most important physical and psychological components of cirrhosis . Over the course of two articles, Mikkelsen et al described the results of patient interviews focusing on the conditions that limit or support coping with physical and psychological problems before and after a group‐therapy intervention. Vaughn‐Sandler et al mailed surveys with questions and opportunities for free‐text responses to capture the rate and impact of feelings of stigma …”

Section: Resultsmentioning

confidence: 99%

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Patient‐reported outcomes in cirrhosis: A scoping review of the literature

et al. 2018

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Section: Resultsmentioning

confidence: 99%

“…For a description of the included studies, see Table 1. Of these 11 studies, four were from the United States, (6)(7)(8)(9) two from Denmark, (10,11) and one each from China, Taiwan, Japan, Spain, and Italy. (12)(13)(14)(15)(16) Overall, these studies enrolled 2,299 (range 11-544) patients.…”

Section: Population Characteristics In Included Studiesmentioning

confidence: 99%

Patient‐reported outcomes in cirrhosis: A scoping review of the literature

et al. 2018

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“…Understanding of disease and its associated treatments Five qualitative [25][26][27][28][29] and two quantitative studies 30,31 contributed to the theme of understanding of disease and its associated treatments (Table 2). Some people with cirrhosis had accepted that their disease would lead to a shorter life expectancy, 27 although evidence about what they understood about their illness was mixed.…”

Section: Perspectives Of People With Cirrhosis and Their Family Membersmentioning

confidence: 99%

“…28 Although patients understood that they may need to undergo complex procedures such as paracentesis, 28 they were still unclear about the implications of many aspects of their care. 28,29 Communication with health professionals Six qualitative 25,[27][28][29]32,33 and two quantitative studies 34,35 contributed to the theme of patients' perspectives on communication with health professionals (Table 2). Although patients with cirrhosis were twice as likely to talk to their doctors about liver disease than those not diagnosed with cirrhosis, 34 they were not satisfied with the quality of information provided by their health professionals.…”

Section: Perspectives Of People With Cirrhosis and Their Family Membersmentioning

confidence: 99%

Supportive and palliative care in people with cirrhosis: International systematic review of the perspective of patients, family members and health professionals

Low

Rohde

Pittordou

et al. 2018

Journal of Hepatology

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Patients and their families had a poor understanding of advanced liver disease and its impact on them. They need more information about the treatments they receive and how to get practical and psychological support. Liver specialists and GPs found it difficult to talk to patients and their families about the seriousness of advanced liver disease and the lack of healthcare options available to them if their condition gets worse. All doctors and nurses involved in the care of patients with advanced liver disease recognise that palliative and supportive care have an important role in improving patient care.

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“…Patients feel stigmatized when communicating with health professionals (5) because of the association of liver disease with substance misuse (6)(7)(8)(9). Patients with alcohol-related liver cirrhosis want to discuss methods of combatting alcohol addiction (10). Patients have little understanding about their disease, its progression or its impact(2), a fact acknowledged by liver health professionals (11).…”

Section: Introductionmentioning

confidence: 99%

What information do people with cirrhosis and their family members want during out-patient appointments? A qualitative study exploring the perspectives of patients, close family member and liver health professionals.

Low¹,

Davis²,

Wilson³

et al. 2019

Preprint

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Background: Good communication between health professionals and patients is important in healthcare, but difficult to implement in practice. This is highlighted in care for people with cirrhosis where patients have little understanding about their disease and feel stigmatized when communicating with health professionals. No study has explored the conversation exchanges between health professionals and patients with cirrhosis. This paper reports on secondary data analysis to explore the contents of patient doctor communication in hepatology out-patient clinics. Methods: Semi-structured interviews and focus groups were conducted with 12 patients, 5 close family members and 14 liver health professionals, aimed at exploring aspects of the consultation: questions asked or not asked during the consultation, the ease of answering questions, understanding of information received, and their preparation for the consultation. All interviews were audio-taped and data analysed using framework analysis. Results: Questions discussed centred on test results, symptoms and their management. Patients and family members felt comfortable with asking health professionals questions, but wanted better information about prognosis, the effects of medication on their symptoms and the likelihood of further deterioration in their liver disease. Patients had difficulty in understanding information received as it was couched in technical terms. Emphasis in consultations focused on the physical aspect of patient care leaving little time to discuss the psychological impact of their disease. Some clinicians felt patients should ask questions about their future, particularly about advance care plans. Key barriers in asking questions included: a) limited time for out-patient appointments, b) expectation that only medical issues could be discussed, c) fear about giving ‘negative’ information to patients, d) memory issues resulting from hepatic encephalopathy. Conclusions: Health professionals should use simple language when providing patients and their families with explanations about liver disease, its physical and psychological impact and prognosis. Information sheets about these topics should be made available for patients to take home. Doctors should be willing to explore supportive care issues with patients or consider referring patients to another health care professional with more time and expertise to discuss specific issues. Further work needed to explore the interactions between these groups using observational methods.

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Coping and rehabilitation in alcoholic liver disease patients after hepatic encephalopathy – in interaction with professionals and relatives

Cited by 5 publications

References 27 publications

Patient‐reported outcomes in cirrhosis: A scoping review of the literature

Patient‐reported outcomes in cirrhosis: A scoping review of the literature

Supportive and palliative care in people with cirrhosis: International systematic review of the perspective of patients, family members and health professionals

What information do people with cirrhosis and their family members want during out-patient appointments? A qualitative study exploring the perspectives of patients, close family member and liver health professionals.

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