The matter of grief, loss and bereavement in families of those living and dying in residential aged care setting: A systematic review.

The grief, loss and bereavement needs of the families of those living and dying in residential aged care setting is not very well understood. This systematic review examines grief, loss, and bereavement experience of, and interventions relating to, family caregivers of those entering, living and dying in residential aged care. Out of 2023 papers that were identified, 35 met the inclusion criteria which included (n=28) qualitative and (n=7) quantitative intervention studies. The qualitative findings indicated quality of care provided to the resident at the end of their life, and after death care influenced family caregivers' grief reactions. The intervention studies revealed that educational interventions have the potential to lead to some benefits in the context of grief loss and bereavement outcomes. Recognizing the emotional experiences and support needs of families and carers may enhance the understanding of the ageing, caring, dying, grieving pathway for older people and their families.

Home symptom management training programme: carer evaluation.

OBJECTIVES: Most people say if they had a terminal illness, they would prefer to be cared for at home and, if possible, to die there. Often this is not possible without a carer to assist with on-going practical care and symptom management. If breakthrough symptoms are not treated in a timely manner, symptoms can escalate quickly causing increased suffering resulting in unwanted hospital transfers. Many carers report feeling motivated but uneducated for the task of medicine management, especially if it involves preparation and/or administration of subcutaneous medicines This study assesses the impact of an education and resource package, caring@home, on carers' confidence, knowledge, and skills in managing palliative symptoms at home using subcutaneous medicines. METHODS: Nurses trained volunteer carers on the use of the package. Carers were invited to complete a 10 min written evaluation survey and to consider consenting to a 30 min semistructure phone interview. RESULTS: Fifty carers returned surveys and 12 were interviewed. Most carers agreed or strongly agreed that the package provided them with the necessary knowledge, skills and confidence to safely and confidently manage breakthrough symptoms using subcutaneous medicines, further, they would recommend the package to others. Interview analysis revealed three main themes: (1) hesitation and motivation to adopt expanded carer role; (2) the importance of a layered approach to support; and (3) avoiding perceived unnecessary contact with nurses. CONCLUSION: The programme can be used by clinical services to empower carers to help enable a person to be cared for, and to die at home.

The COVID-19 Pandemic: Bereavement Experiences Between Hospital and Home Deaths in Palliative Care.

BACKGROUND: Australian COVID-19 public health measures reduced opportunities for people to communicate with healthcare professionals and be present at the death of family members/friends. AIM: To understand if pandemic-specific challenges and public health measures during the COVID-19 pandemic impacted end-of-life and bereavement experiences differently if the death, supported by palliative care, occurred in a hospital or at home. DESIGN: A cross-sectional online survey was completed by bereaved adults during 2020-2022. Analyses compared home and in-patient palliative care deaths and bereavement outcomes. Additional analyses compared health communication outcomes for those identified as persons responsible or next of kin. SETTING/PARTICIPANTS: Of 744 bereaved people; 69% (n = 514) had a death in hospital and 31% (n = 220) at home. RESULTS: The COVID-19 public health measures influenced people's decision to die at home. Compared to hospital deaths, the home death group had higher levels of grief severity and grief-related functional impairment. Only 37% of bereaved people received information about bereavement and support services. 38% of participants who were at least 12 months postdeath scored at a level suggestive of possible prolonged grief disorder. Levels of depression and anxiety between the two groups were not significantly different. CONCLUSIONS: These findings highlight the need for health services to recognize bereavement as fundamental to palliative and health care and provide pre- and post death grief and bereavement care to ensure supports are available particularly for those managing end-of-life at home, and that such supports are in place prior to as well as at the time of the death.

An evaluation of an online education programme to improve nurses' ability to support carers to use subcutaneous medicines.

BACKGROUND: Most Australians say they wish to die at home, but many are admitted to inpatient facilities for symptom management. Caring@home resources can be used to support informal carers to manage breakthrough symptoms safely using subcutaneous medicines. Nurses require education about how to teach informal carers to use these resources. AIM: To evaluate the effectiveness and relevance of an online education programme for registered nurses (RNs) about using the caring@home resources. METHODS: Nurses must complete an online survey prior to the commencement of the online education programme and again upon completion to assess their change in skills, knowledge, confidence and attitudes of the RNs. T-tests were conducted to compare average pre- and post-education scores. FINDINGS: The knowledge, skills and confidence of RNs to teach carers improved significantly following the completion of an education programme. There was a significant change in attitude, meaning that the perceived benefit of teaching informal carers to give subcutaneous medicines improved. All reported they would use the resources in their clinical practice. CONCLUSION: The online education programme is an effective and cost-efficient strategy to educate nurses to support informal carers to help manage breakthrough symptoms using subcutaneous medicines.

Emerging health and social policy considerations for safe and quality end-of-life care in Australia - the evidence, gaps and challenges.

Recognition of the importance of end-of-life care will enable improvements in the quality of care delivered to patients and their families. Australia is experiencing an increasing number of deaths, (many expected), with an aging population who are living longer, often with multimorbidity. This makes end of life care a priority. The last year of someone's life takes place in a complex healthcare system, with increasing pressures on care delivery, placing the spotlight on health service providers to ensure that teams and individuals are supported and enabled to provide such care. Two rapid literature reviews identified best practice principles and processes for delivering safe and high-quality end-of-life care in acute care, aged care and community settings. The reviews identified that end-of-life care is experienced within the whole health and social care system, including hospital admissions interspersed with care in the community, outpatient and emergency department visits and potentially admission to a hospice. Much of this last year of life is spent at home, which may be a personal residence, an aged care facility, prison, supported accommodation or even on the streets. Transitions across settings requires seamless care, as well as organisational readiness to deliver safe and culturally appropriate care. This is more important now with end-of-life care subject to quality assurance mechanisms within the National Safety and Quality Health Service Standards (2nd edn): Comprehensive care. This requires all sectors to work collaboratively when caring for someone at the end of their life in order to see positive changes in care outcomes.

Who cares for the carers? carerhelp: development and evaluation of an online resource to support the wellbeing of those caring for family members at the end of their life.

BACKGROUND: Most people living with a terminal illness and approaching death will need the assistance of a non-professional carer such as a family member, friend, or neighbour to provide physical, emotional, and practical caring supports. A significant portion of these carers can feel overwhelmed, isolated and experience psychological and/or financial distress. Carers can have unmet information needs and information needs can change across the caring period. METHODS: Guided by an Australian National Reference Group, this project undertook a multiphase set of activities to enable the development of an online carer resource. These activities included a literature review of key issues and considerations for family carers supporting someone with a terminal illness, a scoping scan of existing online resources, and interviews and focus groups with eighteen carers to understand their needs and context of caring. This information formed the basis for potential digital content. A web project team was established to create the information architecture and content pathways. User testing survey and usability assessment of the CarerHelp Website was undertaken to assess/optimise functionality prior to release. An evaluation process was also devised. RESULTS: The literature review identified carer needs for practical and psychological support along with better education and strategies to improve communication. The scoping scan of available online resources suggested that while information available to carers is plentiful, much of that which is provided is general, disparately located, inadequately detailed, and disease specific. The eighteen carers who were interviewed highlighted the need for helpful information on: services, symptom management, relationships, preparation for death, managing the emotional and psychological burden that often accompanies caring, and support during bereavement. User testing and usability assessment of the prototype resource led to changes to enhance the user experience and effectiveness of navigation. It also highlighted a lack of awareness of existing resources and the needs of marketing and communication to address this problem. CONCLUSIONS: The project led to the development of an open access online resource, CarerHelp ( www.carerhelp.com.au ), for use by carers and families caring for a person who has palliative care needs. The web metrics demonstrate substantial use of the resources.

Death doula working practices and models of care: the views of death doula training organisations.

BACKGROUND: The role of death doula has emerged in recent years, arguably as a result of overwhelming demands on carers, healthcare professionals and service providers in end-of-life care. Death doulas work independently without governing oversight and enact the role in various ways. The main driver of this evolving role is the organisations that train them. The aim of this study was to examine death doula training organisations' views with regard to DD business models, incorporating the death doula role into other existing models of care, and role enactment. METHODS: An electronic survey was administered to 15 death doula training organisations in 5 countries asking additionally that they disseminate the survey. Responses were received from 13 organisations, based in Australia (n = 4), the US (n = 4), Canada (n = 2), the UK (n = 1), Sweden (n = 1) and New Zealand (n = 1). This paper provides the qualitative findings from four open-text questions posed within the survey related to models of care. RESULTS: Qualitative data analysis was inductive, themes were determined in relation to: (1) standardised business model for death doulas, (2) death doulas incorporated into existing models of care or existing funding options, (3) death doulas who volunteer their services rather than charge money, and (4) role specialisation such as has occurred with birth doulas. CONCLUSIONS: The death doula role has the potential to be formally recognised in the future under national registration schemes, accompanied by death doula training required via certification. Until such time the death doula role will continue to evolve much as the birth doula role has, organically and unstructured. How and if death doulas are incorporated into existing models of health or social care remains to be seen as the organisations that train them push for independence, flexibility and fiscal independence.

Learning Designers as Expert Evaluators of Usability: Understanding Their Potential Contribution to Improving the Universality of Interface Design for Health Resources.

User-based evaluation by end users is an essential step in designing useful interfaces. Inspection methods can offer an alternate approach when end-user recruitment is problematic. A Learning Designers' usability scholarship could offer usability evaluation expertise adjunct to multidisciplinary teams in academic settings. The feasibility of Learning Designers as 'expert evaluators' is assessed within this study. Two groups, healthcare professionals and Learning Designers, applied a hybrid evaluation method to generate usability feedback from a palliative care toolkit prototype. Expert data were compared to end-user errors detected from usability testing. Interface errors were categorised, meta-aggregated and severity calculated. The analysis found that reviewers detected N = 333 errors, with N = 167 uniquely occurring within the interface. Learning Designers identified errors at greater frequencies (60.66% total interface errors, mean (M) = 28.86 per expert) than other evaluator groups (healthcare professionals 23.12%, M = 19.25 and end users 16.22%, M = 9.0). Patterns in severity and error types were also observed between reviewer groups. The findings suggest that Learning Designers are skilled in detecting interface errors, which benefits developers assessing usability when access to end users is limited. Whilst not offering rich narrative feedback generated by user-based evaluations, Learning Designers complement healthcare professionals' content-specific knowledge as a 'composite expert reviewer' with the ability to generate meaningful feedback to shape digital health interfaces.

Allied health professionals' contribution to care at end of life in aged care settings.

BACKGROUND: The Australian population is aging, and the proportion of older Australians will continue to grow over the coming decades. However, there is a lack of research published on the specific roles and responsibilities of allied health professionals (AHPs) providing palliative care within an aged care context. Understanding the roles and needs of AHPs providing care during the last months of life in the community and aged care facilities could contribute to workforce planning, targeted information and improved care. METHODS: In total, 108 eSurveys were collected between November 2019 to May 2020 from three allied health professions working in government-funded aged care; the majority of these being in residential aged care. Descriptive data are reported on the provision of care in key palliative care domains, care settings and practice activity. RESULTS: Nearly all respondents reported they had worked with older Australians who had palliative care needs. However, over one-third of respondents reported low levels of confidence in supporting clients or residents with palliative care needs. The majority indicated they would benefit from additional education and training and support in palliative care. CONCLUSIONS: This study investigated the role of the allied health workforce in contributing to the care of older Australians at the end of life. It has also demonstrated that there are gaps in practice activity and work role that must be addressed to ensure this workforce can support older people with palliative care needs in receipt of aged care services.

Natural Death Versus Known Date-Of-Death: A Qualitative Study of Views on Voluntary Assisted Dying in an Online Course About Death.

The study aimed to describe views on Voluntary Assisted Dying (VAD), gleaned through qualitative analysis of participant responses to a set activity, run during the 2018 'Dying2Learn' Massive Open Online Course (MOOC). Data from 508 participants, most of whom identified as health professionals, were analysed using thematic content analysis, and themes generated. A large proportion of participants discussed their personal views related to VAD, specifically around choice, control, dignity, palliative care and dying at home, medical intervention, societal factors, the impact on those left behind, laws and regulations, dying 'naturally', advance care directives, and being in pain. In this study, participants had many different views on the act itself, often divisive, but also with common concepts such as respecting the choices and decisions of others.

Managing multimorbidity: a qualitative study of the Australian general practitioner experience.

BACKGROUND: Multimorbidity is prevalent in general practice and general practitioners internationally report challenges in its management. Understanding the perspectives of general practitioners at the frontline of care is important for system sustainability and accessibility as populations age. OBJECTIVE: To explore Australian general practitioner perspectives on managing multimorbidity, the factors supporting their work, and those impeding their ability to meet their own standards of care provision. METHOD: A qualitative study conducted with Australian general practitioners using semistructured, in-depth interviews and inductive thematic data analysis. RESULTS: Twelve interviews with general practitioners were conducted. Three main themes were constructed from the data: Multimorbidity as an encounter with complexity and contingency; Evidence constraints in multimorbidity care; and Concerns for patient safety. System structure and the Australian general practice model restrict general practitioners' ability to provide care to their level of satisfaction by linking short consultation times to practice remuneration. Attitudes toward the applicability of guideline evidence were mixed despite most general practitioners questioning its generalizability. Patient safety concerns pervaded most interviews and largely centered on system fragmentation and insufficient intersectoral communication. General practitioners rely on multiple sources of information to provide patient-centered care but chiefly the accumulated knowledge of their patients. CONCLUSIONS: Australian general practitioners share many multimorbidity concerns with international colleagues. While multimorbidity-specific evidence may be unrealistic to expect in the immediate term, system investment and adaptation is needed to support general practice sustainability and clinician ability to provide adequate multimorbidity care, suitably remunerated, into the future.

An international survey of Death Doula training organizations: the views of those driving Death Doula training and role enactment.

Context: Death Doulas are working globally to provide non-medical end-of-life care. They have different training experiences and views on the role and whether it should be standardised. Objective: To seek the views of organisations responsible for training Death Doulas in order to determine what the drivers are behind this emerging role. Methods: We conducted an online survey with Death Doula training organisations in five countries utilising both a targeted and snowball approach. Qualitative analysis was undertaken with themes pre-determined (apriori) due to the nature of the survey categories. Results: In total, representatives from 13 organisations in Australia, New Zealand, Sweden, Canada, United Kingdom, and United States responded. The organisations had provided training for 0 to 20 years, with one just starting and another training birth doulas and now expanding. Owners and trainers hold an array of qualifications such as academic, medical, non-medical, and life experience. Curricula have usually been developed locally, and not always included pedagogical consideration, a strategic business model, nor mapping processes such as gap analysis. The organisations are run similarly, and curricula have several consistent topics but with distinctly different approaches. Trainers' views are also mixed about the way to proceed with registration of the Death Doula role. Conclusion: The contrasting views of training organisations explain much of the ambiguity of Death Doulas themselves regarding standardisation of registration, education and role enactment. If heading towards the ultimate goal of professionalisation of the role then a challenging path lies ahead with little in the way of agreement in what this would require.

Palliative Care Within the Primary Health Care Setting in Australia: A Scoping Review.

Objectives: This scoping review identifies and details the scope of practice of health professionals who provide palliative care within the primary health setting in Australia. Methods: A scoping review approach was conducted on the Cinahl (Ebsco), Scopus, Medline (Ovid) and PubMed databases to extract articles from 1 December 2015 to 1 December 2020. Broad text words and MeSH headings were used with relevance to palliative care, general practice, primary health, and community setting. Extracted journal articles were limited to those based on the Australian population or Australian health system. Results: Eighty-four papers met the inclusion criteria and were included in the review. The review identified the following health professional roles within the Primary Health Care setting undertaking palliative care: General Practitioner, Nurse, Pharmacist, Paramedics, Carers, and Allied Health professionals. Conclusion: This review offers a first understanding of the individual health professional roles and multidisciplinary team approach to actively providing palliative care within the Primary Health Care setting in Australia.

Equity consideration in palliative care policies, programs, and evaluation: an analysis of selected federal and South Australian documents.

BACKGROUND: Inequity in access to palliative care and symptom relief is one of the greatest disparities in global health care. A public health approach to palliative care is underpinned by the social view of health that puts an emphasis on equity, community engagement and empowerment, a supportive policy environment, and social determinants of health. Consideration of equity in policy is critical so that it can be translated into equitable services. However, the extent to which Australian palliative care policies incorporate equity, and their translation into actual actions have not been extensively examined. This exploratory study aimed to examine the extent to which Australian federal and South Australian palliative care policies and initiatives incorporate equity, and to identify evidence gaps and research priorities that can inform equity-oriented policies and practices. METHODS: We reviewed 25 federal and South Australian documents relating to palliative care published over the past five years. Documents were publicly available from the Australian Government Department of Health website. We used search filter 'Palliative care and end of life' in the Department's resource webpage to narrow down documents to those with palliative care and end of life in the document title and/or content. The initial list was discussed in the research team to ensure key documents are included. Supplementary to document review, we conducted five key informant interviews in South Australia. Interview participants were people from the policy sector, not-for-profit organisations, a funding body and a community advocacy group in South Australia who had knowledge and experience in palliative care policy, practice and research. Documents and interview transcripts were imported into the NVivo 12 software for coding. Content analysis looked at the frequencies of relevant terms, and then more detailed inductive and deductive thematic analysis was undertaken which was guided by an equity action framework. RESULTS: Overall, we found incremental steps forward over the past few years in considering equity in Australian palliative care policies. Key themes that emerged from the study were: identifying population groups experiencing poor access to palliative care, strategies to improve access including increased awareness of palliative care, flexible models of care, building workforce capacity, and the need for greater investment in palliative care research and evaluation. Strategies to address systemic barriers as well as social, political and cultural determinants of inequity was less evident in policy documents. There was little evidence of actions to engage and empower communities. Interviews provided insight on key areas of priority for future palliative care research. CONCLUSIONS: Achieving the goal of equity in palliative care for all is complex and multifaceted. It requires strong commitment and actions at policy and government level but also in clinical practice, workforce planning and capacity building, community engagement and research investment to implement and evaluate public health approaches to palliative care.

Steps towards equitable care: creating web pages to highlight diversity for Australia’s aged care and end of life care workforce.

BACKGROUND: The impact of Australia's diverse population on the aged care sector has been acknowledged, with the Royal Commission into Aged Care Quality and Safetyfindings providing evidence of the importance of population diversity for consumer-directed and person-centred care. Similarly, the Aged Care Quality Standards and Aged Care Diversity Framework acknowledge the diversity of Australia's ageing population and potential implications for equitable access to care and the ensuing importance of culturally appropriate and culturally safe care. This paper reports on the development of informational web pages and utilisation findings for use by the aged care workforce supporting diverse populations. METHODS: Content was created for the End of Life Directions for Aged Care website, based on rapid review findings relating to barriers and limitations for people accessing equitable care in the aged care and palliative care sectors. RESULTS: Website pages containing embedded links to useful content and resources for health professionals and care workers who work with older diverse adults are shown to be well received among users. CONCLUSIONS: As Australia's future population will age with increasing diversity markers, with implications for aged care and palliative care service provision, workforce access to up-to-date, relevant and evidence-informed information on best practice non-clinical support for individuals from diverse backgrounds towards the end of life promotes a person-centred care approach. Access data shows that the website content is being utilised increasingly over time and suggests that it is filling a gap in comprehensive and accessible end of life resources that have been missing from the Australian aged care and palliative care workforce.

Australian general practice experiences of implementing a structured approach to initiating advance care planning and palliative care: a qualitative study.

OBJECTIVES: Initiation of advance care planning (ACP) and palliative care (PC) assessments in general practice is key to quality end-of-life care. The Advance Project promotes a team-based approach to initiating ACP and PC needs assessment in general practices through training, resources and practical support for implementation from local primary health networks (PHNs). This paper aims to understand: (1) general practice participants' experiences of undertaking Advance Project training and implementing the Advance Project resources in their practices; (2) barriers and facilitators to implementation of Advance Project resources; and (3) PHN staff experiences of supporting general practices through training and practical support for implementation of the Advance Project resources. DESIGN: Qualitative study using semistructured interviews and thematic analysis. SETTING: Twenty-one general practices and four PHNs from three Australian states were recruited between June 2019 and May 2020. PARTICIPANTS: General practitioners (GPs), general practice nurses, practice managers (PMs) and PHN staff. RESULTS: 45 participants comprising 13 GPs, 13 general practice nurses, 9 PMs, 3 allied health staff and 7 PHN staff were interviewed. The general practice participants generally agreed that the Advance Project training/resources led to changes in their own behaviour and increased their awareness of the importance of ACP/PC discussion with their patients. Participants reported the following benefits for patients: increased awareness of ACP; engagement with families/carers and peace of mind. Key facilitators for successful implementation were a team-based approach, the role of the PHN, the role of practice champions, training facilitators' ability to influence peers and facilitate change, and mentoring support. Barriers to implementation included issues related to workplace culture, cost, time/workload, patients and health system. CONCLUSION: Findings suggest that the Advance Project approach facilitated successful implementation of ACP and PC needs assessment into usual care in general practices that encouraged teamwork among GPs and general practice nurses. The ability of the practice to make the best use of practical support and guidance available to them through their local PHN both before and during implementation was a key factor in integration of Advance Project resources into routine practice.

Impact of the COVID-19 Pandemic on Funerals: Experiences of Participants in the 2020 Dying2Learn Massive Open Online Course.

A Massive-Open-Online-Course (MOOC) on death and dying (Dying2Learn) was offered in 2020, designed to build conversations about death as a natural part of life. In week 1, the content focused on how today's society engages with death through the language we use, humour, public mourning and funerals. This study investigated 2020 MOOC participants' responses to an online activity reflecting on funerals and memorials during the time of COVID-19. From this activity, n = 204 responses were analysed qualitatively. Themes included the positives and negatives of virtual funeral attendance (e.g. opportunity to have a way to participate when travel barriers existed, versus a sense of impersonal voyeurism); and the challenges related to the inability to physically comfort the bereaved due to physical distancing requirements. Comments made as part of this MOOC activity provide a unique insight into the community's experience of funeral changes necessitated by COVID-19, with important implications for the grieving process.

Barriers and facilitators to nurse-led advance care planning and palliative care practice change in primary healthcare: a qualitative study.

Primary care settings are ideal for initiating advance care planning (ACP) conversations and assessing palliative and supportive care needs. However, time constraints and a lack of confidence to sensitively and efficiently initiate such discussions are noted barriers. The Advance Project implemented a national multicomponent training package to support Australian general practice nurses (GPNs) to work with GPs to initiate ACP and palliative care conversations in their practice. This paper reports on semistructured interviews conducted with 20 GPNs to explore barriers and facilitators to implementing the Advance Project model. Participants identified a range of factors that affected implementation, including lack of time, limited support from colleagues, lack of knowledge about systems and funding processes in general practice and a need for better alignment of the Advance Project resources and practices with general practice information management platforms. Barriers related to professional roles, particularly the lack of clarity and/or limitations in the scope of practice of GPNs, highlighted the importance of defining and supporting the roles that different primary health practice staff could play to support implementation of the model. The findings underline the need for complementary training in the Advance Project model for GPs and practice managers to enable a team-based approach to implementation.

Family carer needs in advanced disease: systematic review of reviews.

BACKGROUND: Family carers are vital in the management and delivery of home-based palliative care. Decision-makers need to know what the most commonly expressed unmet needs of family carers are to target available support services. AIM: To identify the most commonly expressed needs of family carers of people with an advanced disease, assess the quality of current evidence, and set an agenda for future research and clinical practice. DESIGN: A systematic review of reviews, prospectively registered on PROSPERO. Study quality was assessed using the Joanna Briggs Institute critical appraisal checklist for systematic reviews and research syntheses. DATA SOURCES: MEDLINE, Embase, Emcare, PsycINFO, CINAHL, Informit and Cochrane Library were searched for reviews about the needs of carers looking after patients with advanced disease from 2010 to 2020. RESULTS: Findings from 21 reviews identified emotional support, disease-specific knowledge, carer role responsibilities, self-care and general practical support as the most commonly expressed needs expressed by family carers. Additionally, access to professional services, formal education opportunities and communication with health professionals were identified as caregivers' preferred ways of having these needs met. Extraction of carer-specific needs was challenging at times as results were often combined with patient results in reviews. CONCLUSION: Practical difficulties exist in effectively resourcing services to meet the needs of family carers. Information regarding the most commonly expressed needs shared by caregivers and their preferred delivery source can provide an opportunity to focus available support services to achieve the highest possible impact for carers of patients with advanced disease. PROSPERO REGISTRATION NUMBER: CRD42018088678.

Promise and peril-defining ethical telehealth practice from the clinician and patient perspective: A qualitative study.

OBJECTIVES: We undertook a qualitative study to examine and compare the experience of ethical principles by telehealth practitioners and patients in relation to service delivery theory. The study was conducted prior to and during the recent global increase in the use of telehealth services due to the COVID-19 pandemic. METHODS: We conducted semi-structured interviews with 20 telehealth practitioners and patients using constructionist grounded theory methods to collect and analyse data. Twenty-five axial coded data categories were then unified and aligned through selective coding with the Beauchamp and Childress (2013) framework of biomedical ethics. The groups were then compared. RESULTS: Thirteen categories aligned to the ethical framework were identified for practitioners and 12 for patients. Variance existed between the groups. Practitioner results were non-maleficence 4/13 or (31%), beneficence 4/13 (31%), professional-patient relationships 3/12 (22%), autonomy 1/13 (8%) and justice 1/13 (8%). Patient data results were non-maleficence 4/12 (33%), professional-patient relationships 3/12 (33%), autonomy 2/12 (18%), beneficence 1/12 (8%) and justice 1/12 (8%). CONCLUSIONS: Ethical principles are experienced differently between telehealth practitioners and patients. These differences can impact the quality and safety of care. Practitioners feel telehealth provides better care overall than patients do. Patients felt telehealth may force a greater share of costs and burdens onto them and reduce equity. Both patients and practitioners felt telehealth can be more harmful than face-to-face service delivery when it creates new or increased risk of harms. Building sufficient trust and mutual understanding are equally important to patients as privacy and confidentiality.