A thematic analysis of hospital medical records of patients with advanced illness experiencing incarceration in the last 3 months of life.

BACKGROUND: The constraining prison culture is not, for the most part, conducive to the provision of palliative care for people in prison. AIM: This study aimed to explore patterns of palliative and end-of-life care provision for hospitalised prison patients. DESIGN: A retrospective qualitative review of hospital medical records to explore the quality of end-of-life care provision for patients experiencing incarceration who died within hospital. Qualitative inductive analysis of record extracts of each patients final 3-months of life was undertaken. SETTING/PARTICIPANTS: An Australian metropolitan hospital responsible for providing secondary and tertiary health services for people experiencing incarceration. This study included a systematic sample of male patients experiencing incarceration who died in hospital between 2009 and 2019. RESULTS: Medical record extracts of 15 male patients revealed two broad themes: (1) barriers to equitable access to palliative care for incarcerated hospitalised patients; and (2) factors that facilitated quality end-of-life care for patients and families. Barriers included: tensions between balancing risk and humanity; and limited agency over place and death. Conversely, early recognition of deterioration and anticipated dying provided patients and families opportunity to focus on end-of-life goals. CONCLUSIONS: Institutional influences of security and control challenged the provision of equitable end-of-life care for people experiencing incarceration. Further research is required to inform, and incorporate, best approaches to identifying patient wishes and advance planning into care within, or despite, the constrains of incarceration. Policy reform and a coordinated, best practice approach to the management of end-of-life care for people experiencing incarceration is needed.

An evidence-base for the implementation of hospital-based palliative care programs in routine cancer practice: A systematic review.

BACKGROUND: Despite global support, there remain gaps in the integration of early palliative care into cancer care. The methods of implementation whereby evidence of benefits of palliative care is translated into practice deserve attention. AIM: To identify implementation frameworks utilised in integrated palliative care in hospital-based oncology services and to describe the associated enablers and barriers to service integration. DESIGN: Systematic review with a narrative synthesis including qualitative, mixed methods, pre-post and quasi experimental designs following the guidance by the Centre for Reviews and Dissemination (PROSPERO registration CRD42021252092). DATA SOURCES: Six databases searched in 2021: EMBASE, EMCARE, APA PsycINFO, CINAHL, Cochrane Library and Ovid MEDLINE searched in 2023. Included were qualitative or quantitative studies, in English language, involving adults >18 years, and implementing hospital-based palliative care into cancer care. Critical appraisal tools were used to assess the quality and rigour. RESULTS: Seven of the 16 studies explicitly cited the use of frameworks including those based on RE-AIM, Medical Research Council evaluation of complex interventions and WHO constructs of health service evaluation. Enablers included an existing supportive culture, clear introduction to the programme across services, adequate funding, human resources and identification of advocates. Barriers included a lack of communication with the patients, caregivers, physicians and palliative care team about programme goals, stigma around the term 'palliative', a lack of robust training, or awareness of guidelines and undefined staff roles. CONCLUSIONS: Implementation science frameworks provide a method to underpin programme development and evaluation as palliative care is integrated within the oncology setting.

Telehealth in outpatient delivery of palliative care: A qualitative study of patient and physician views.

OBJECTIVES: The COVID-19 pandemic has widened the funded use of telehealth in Australia to support telehealth delivery to all patients in any setting. Increasing the use and experience of telehealth brings to light unique insights into the advantages and challenges of this new model of healthcare delivery This study aimed to qualitatively explore the experiences of both palliative care physicians and patients setting, including their views on its future role in healthcare. METHODS: This qualitative study was conducted across three metropolitan tertiary palliative care centers in Victoria, Australia between November 2020 and March 2021. Purposive sampling identified 23 participants (12 physicians and 11 patients). Semi-structured interviews focused on the last telehealth consultation, thoughts and impressions of telehealth, and the possibility of telehealth remaining in palliative care. A thematic approach was adopted to code and analyze the data. RESULTS: Telehealth transformed the ways physicians and patients in this study perceived and engaged with outpatient palliative care across the entire continuum of care. Four key themes were identified: (1) access to care; (2) delivery of care; (3) engagement with care; and (4) the future. SIGNIFICANCE OF RESULTS: This study provides novel data bringing together the perspective of patients and physicians, which confirms the utility of telehealth in palliative care. Its convenience enables more frequent review, enables reviews to occur in response to lower levels of concern, and adds toward enhancing the continuity of care across and between settings. Moving forward, support seemed strongest for a hybrid model of telehealth and face-to-face consultations guided by key parameters relating to the level of anticipated complexity.

Care plus study: a multi-site implementation of early palliative care in routine practice to improve health outcomes and reduce hospital admissions for people with advanced cancer: a study protocol.

BACKGROUND: Current international consensus is that 'early' referral to palliative care services improves cancer patient and family carer outcomes. In practice, however, these referrals are not routine. An approach which directly addresses identified barriers to early integration of palliative care is required. This protocol details a trial of a standardized model of early palliative care (Care Plus) introduced at key defined, disease-specific times or transition points in the illness for people with cancer. Introduced as a 'whole of system' practice change for identified advanced cancers, the key outcomes of interest are population health service use change. The aims of the study are to examine the effect of Care Plus implementation on (1) acute hospitalisation days in the last 3 months of life; (2) timeliness of access to palliative care; (3) quality and (4) costs of end of life care; and (5) the acceptability of services for people with advanced cancer. METHODS: Multi-site stepped wedge implementation trial testing usual care (control) versus Care Plus (practice change). The design stipulates 'control' periods when usual care is observed, and the process of implementing Care Plus which includes phases of planning, engagement, practice change and evaluation. During the practice change phase, all patients with targeted advanced cancers reaching the transition point will, by default, receive Care Plus. Health service utilization and unit costs before and after implementation will be collated from hospital records, and state and national health service administrative datasets. Qualitative data from patients, consumers and clinicians before and after practice change will be gathered through interviews and focus groups. DISCUSSION: The study outcomes will detail the impact and acceptability of the standardized integration of palliative care as a practice change, including recommendations for ongoing sustainability and broader implementation. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN 12619001703190 . Registered 04 December 2019.

The role of explanatory models of chronic hepatitis B on illness experience: a qualitative study of Vietnamese participants in Australia.

ABSTRACTObjective: This study utilises Kleinman's theory of explanatory models of health and illness to explore the experience of chronic hepatitis B (CHB) among Vietnamese people living in Australia. It examines how these explanatory models are formed and shaped by the broader community, and the extent to which this influences understandings and responses to CHB.Design: This study is based on semi-structured interviews with 22 Vietnamese people with CHB in Melbourne, Australia. The individual interviews ranged from 30 minutes to 1.5 hours in length, and were electronically recorded, translated where necessary and transcribed verbatim. Transcripts were thematically coded using NVivo 10, with coding themes guided by categories identified in Kleinman's explanatory models framework.Results: Fundamental to most participants' narratives was the profound impact of cultural, social and economic environments on their understandings and responses to CHB. Regardless of socio-demographic background, most participants juxtaposed biomedical elements of CHB with their own existing humoral-based health belief system. In the context of a chronic asymptomatic condition that, for the most part, does not require pharmaceutical treatment, a humoral-based health belief system provided a familiar conceptual framework from which participants could immediately respond and take control of their infection. This was observed through changes in diet and lifestyle, and the use of traditional herbal medicine in an attempt to 'cure' or halt the progression of their infection.Conclusions: By speaking to people living with CHB directly, it became clear that there is a disjuncture between what is commonly assumed by the biomedical model of CHB and what is understood by individuals with the infection. The public health burden of CHB will continue unless the healthcare system, including public health policies, deliver a hepatitis B model of care that is responsive to the needs and expectations of priority populations.

Low-Intensity mental health Support via a Telehealth Enabled Network for adults with diabetes (LISTEN): protocol for a hybrid type 1 effectiveness implementation trial.

BACKGROUND: Mental health problems are common among people with diabetes. However, evidence-based strategies for the prevention and early intervention of emotional problems in people with diabetes are lacking. Our aim is to assess the real-world effectiveness, cost-effectiveness, and implementation of a Low-Intensity mental health Support via a Telehealth Enabled Network (LISTEN), facilitated by diabetes health professionals (HPs). METHODS: A hybrid type I effectiveness-implementation trial, including a two-arm parallel randomised controlled trial, alongside mixed methods process evaluation. Recruited primarily via the National Diabetes Services Scheme, Australian adults with diabetes (N = 454) will be eligible if they are experiencing elevated diabetes distress. Participants are randomised (1:1 ratio) to LISTEN-a brief, low-intensity mental health support program based on a problem-solving therapy framework and delivered via telehealth (intervention) or usual care (web-based resources about diabetes and emotional health). Data are collected via online assessments at baseline (T0), 8 weeks (T1) and 6 months (T2, primary endpoint) follow-up. The primary outcome is between-group differences in diabetes distress at T2. Secondary outcomes include the immediate (T1) and longer-term (T2) effect of the intervention on psychological distress, general emotional well-being, and coping self-efficacy. A within-trial economic evaluation will be conducted. Implementation outcomes will be assessed using mixed methods, according to the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework. Data collection will include qualitative interviews and field notes. DISCUSSION: It is anticipated that LISTEN will reduce diabetes distress among adults with diabetes. The pragmatic trial results will determine whether LISTEN is effective, cost-effective, and should be implemented at scale. Qualitative findings will be used to refine the intervention and implementation strategies as required. TRIAL REGISTRATION: This trial has been registered with the Australian New Zealand Clinical Trials Registry (ACTRN: ACTRN12622000168752) on 1 February, 2022.

The personal and social impact of chronic hepatitis B: A qualitative study of Vietnamese and Chinese participants in Australia.

This study explores the lived experiences of chronic hepatitis B (CHB) among Vietnamese and Chinese-born people living in Melbourne, Australia. The aims of this study were to investigate the personal and social implications of CHB, and the extent to which these implications, including experiences of stigma and marginalisation, affect individuals' overall quality of life. This study is based on individual semi-structured interviews with 37 Vietnamese and Chinese people with CHB in Australia (n = 22 and n = 15 respectively). The interviews were conducted between February 2015 and November 2016. Electronically recorded interviews of up to 1.5 hr were conducted, translated where necessary and transcribed verbatim. Transcripts were coded using NVivo, with coding themes guided by the principles of thematic analysis. Fundamental to most participants' accounts was the experience of living in constant fear of stigma and marginalisation, which participants unanimously attributed to prevailing misconceptions about hepatitis B-related transmission routes and disease outcomes. The accompanying experiences of social isolation-whether imposed upon themselves or by others-brought on additional feelings of shame and emotional pain, which had a profound impact on participants' overall quality of life. By exploring participants' lived experiences of hepatitis B, it became clear that concerns about the clinical implications related to hepatitis B as a biomedical infection make up only a small part of their experiences. Of particular significance were personal and social concerns around transmission, disclosure as well as the impact of stigma and marginalisation on participants and their families. Adopting a comprehensive multi-pronged response to tackle the multitude of complexities surrounding this infection among key affected communities will be more effective than just recognising the physical experience of the infection.

A qualitative investigation of barriers, support-seeking and coping among South Sudanese people with chronic hepatitis B in Australia.

This inquiry examines health-seeking practices and challenges among South Sudanese people from refugee backgrounds with chronic hepatitis B in Australia. Fifteen semi-structured interviews were conducted. Using interpretative thematic analysis, the results revealed four themes, consisting of barriers and facilitators to clinical follow up, treatment and support-seeking practices and coping responses. Time constraints, having divergent views about treatment decisions and perceived inadequate clinical support were also identified as barriers. Being referred to a specialist, being aware of the risk associated with liver cancer and sending reminders about appointments were identified as facilitators to clinical follow up. Treatment-seeking practices involved both biomedical and alternative therapies. Participants mainly drew on their social networks and supports, religious beliefs and individual resilience as coping strategies. The findings are important for improving access to treatment and care and support for people with chronic hepatitis B from the South Sudanese community.