Partnering with support persons and clinicians to improve the health care experiences of patients with cirrhosis

Abstract

Aim To explore the care experiences of Aboriginal and Torres Strait Islander Australians diagnosed with cirrhosis with a focus on support needed. Background Cirrhosis disproportionately affects Indigenous Australians, and liver diseases contribute to the mortality gap between Indigenous and other Australian adults. Design A qualitative study. Methods Using yarning methods, Indigenous patients (n = 13) and support persons (n = 3) were interviewed by an Aboriginal researcher during April‐July, 2020. Thematic analysis was used to identify common themes using an inductive approach. Results Six themes emerged. (1) Experience of diagnosis. This theme included stories of delays in the system, self‐awareness of signs and symptoms and relief of being diagnosed. (2) ‘Shame, shame, shame’. Experiences of prejudices and discrimination from health professionals, the lack of understanding of cirrhosis among health professionals, and stories about alcohol cessation and counselling around alcohol cessation. (3) Health literacy. Participants’ understanding of cirrhosis was variable. While the importance of knowledge was recognised, ‘what works for someone might not work for others’. Several patients partnered with their support persons and clinicians to bridge the health literacy gap. (4) Sources of support included family and friends, transport facilities, health professionals and peers. (5) Positive and negative aspects of communication and patient consultation were discussed. (6) Psychosocial counselling to ‘look after the caring side’. The need for more mental health care services was raised. Conclusion Barriers related to poor health literacy, stigma and lack of practical and emotional support, and issues with communication and patient consultation, may lead to inequitable access to cirrhosis care and treatment for Indigenous Australians. Relevance to clinical practice Gaining knowledge of the experiences of Indigenous Australians with cirrhosis is important for providing patient‐centred and culturally appropriate care. Liver specialist nurses have an important role in bridging the health literacy gap and in supporting Indigenous patients and families.

Hepatocellular carcinoma surveillance may be associated with potential psychological harms in patients with cirrhosis

“…Although this is surprising, given the poor prognosis typically associated with HCC compared to these other cancer types, psychological reactions may be blunted due to patients undergoing HCC surveillance having cirrhosis and already considering themselves as having significant comorbidity. In fact, patients with cirrhosis may have fatalism when approaching HCC risk, thereby framing HCC development as a question of “when” instead of “if.” These patients may therefore have stronger support systems and increased resilience to cope with stressors, including positive surveillance results 36,37 . This hypothesis was supported by our semistructured interviews, in which patients with true and FP results both reported coping responses by engaging in other healthy behaviors or external support systems.…”

“…These patients may therefore have stronger support systems and increased resilience to cope with stressors, including positive surveillance results. [36,37] This hypothesis was supported by our semistructured interviews, in which patients with true and FP results both reported coping responses by engaging in other healthy behaviors or external support systems. Providers' framing of test results, including any risk of FPs, as well as treatment options for those with newly diagnosed HCC may have also helped mitigate psychological distress, although we were unable to assess patient-provider communication as part of our study.…”

A new theory to promote self-management of symptom clusters and healthcare quality in patients with decompensated cirrhosis

“…However, some patients with greater resistance in the management of their own symptoms also had higher external support needs. As such, healthcare providers need to evaluate the patient own coping ability and offer appropriate supports to patients in need [ 17 , 35 ] to improve the management level of symptom clusters.…”

“…Watson et al [13] conducted a qualitative study to examine how adolescents experience anhedonia, a core symptom of depression, through semi-structural interviews of 2 patient groups: adolescents with a primary diagnosis of depression and those with elevated depressive symptoms. To date, however, only a small number of qualitative studies have been conducted for symptom analysis and clustering among patients with cirrhosis, [14][15][16][17][18] and such a qualitative study has not been reported for patients with decompensated cirrhosis.…”