Dr Joanne Lewis is a palliative care clinician and academic focused on the needs of disadvantaged socio-economic groups facing terminal illness. As an undergraduate and post graduate lecturer in the Faculty of Health at UTS and the faculty’s Director of Health programs, Joanne coordinates and teaches about aged care, palliative care, Indigenous health and primary health care.
A registered nurse with 30 years of experience, she became aware of the importance of person-centred care and equity in access to health services while working in the Northern Territory with Indigenous patients with chronic health needs. She has worked also as a clinical nurse consultant in palliative care in Western Sydney for over a decade.
Joanne’s research has examined the social determinants in palliative care and challenged existing policy on the subject. Her UTS Doctor of Philosophy degree explored the palliative care needs of vulnerable populations within a social-determinants-of-health and social-capital conceptual framework.
Joanne has published widely and regularly reviews articles for national and international journals. She is a member of the Australian College of Nursing, a Palliative Care Network member, and a member of Agency for Clinical Innovation.
- Palliative care
- Aged care
- Social capital
- Primary health care
Palliative care, primary health care, aged care and ethics
Saunders, CM, Palesy, D & Lewis, J 2019, 'Systematic review and conceptual framework for health literacy training in health professions education', Health Professions Education, vol. 5, no. 1, pp. 13-29.View/Download from: UTS OPUS or Publisher's site
Bindley, K, Lewis, J, Travaglia, J & DiGiacomo, M 2019, 'Disadvantaged and disenfranchised in bereavement: A scoping review of social and structural inequity following expected death.', Social science & medicine (1982), vol. 242.View/Download from: UTS OPUS or Publisher's site
An emphasis on individual intervention and psychological complexity has characterised research on bereavement following an experience of life-limiting illness. Exploration of "structural vulnerability" as a positionality produced by social and structural inequity could provide insights into areas of practice and policy in need of development. This scoping review sought to summarise published research on experiences of social and structural inequities in the context of bereavement due to life-limiting illness. Underpinned by recognised methodological frameworks, systematic searches were conducted of four electronic databases. Eligible studies attended to bereavement experience following the death of an adult due to life-limiting illness, included consideration of social and structural inequities, and were undertaken in high income countries between 1990 and 2018. Following thematic analysis, a conceptual framework was developed. Of 322 records, 62 full text articles were retrieved and 15 papers met inclusion criteria. Studies highlighted unequal social status in bereavement related to gender, class, sexuality, ethnicity and age, with structural inequity experienced in interactions with institutions and social networks. Studies also identified that the experience of bereavement itself may be accompanied by exposure to disenfranchising systems and processes. Structural vulnerability appeared to be associated with outcomes including psychological distress, social disenfranchisement and practical concerns such as financial strain, housing insecurity and employment issues. Social and structural inequities potentially contribute to layered and patterned experiences of disadvantage and disenfranchisement following expected death, with implications for individual agency. Findings point to the need for consideration of socio-ecological approaches within and beyond specialist palliative care, involving development of more responsive social policy, coordinated advocacy, and ...
Palesy, DL, Jakimowicz, S, Saunders, C & Lewis, J 2018, 'Australian Home Care Work: an Integrative Review', Home Health Care Services Quarterly, vol. 37, no. 2, pp. 113-139.View/Download from: UTS OPUS or Publisher's site
The home care sector comprises one of Australia's fastest growing workforces, yet few papers capture the overall landscape of Australian home care. This integrative review investigates home care work with the aim of better understanding care recipients and their needs, funding and regulation, care worker skills, tasks, demographics, employment conditions and training needs. Over 2,700 pieces of literature were analysed to inform this review. Results suggest sector fragmentation and a home care workforce who, although well placed to improve outcomes for care recipients, are in need of better training and employment support. Suggestions for future research regarding Australian home care include studies that combine both aged and disability aspects of care, more research around care recipients, priority needs and strategies for addressing them, and how best to prepare home care workers for their roles.
Jakimowicz, S, Perry, L & Lewis, J 2018, 'Compassion satisfaction and fatigue: A cross-sectional survey of Australian intensive care nurses.', Australian Critical Care, vol. 31, no. 6, pp. 396-405.View/Download from: UTS OPUS or Publisher's site
Compassion satisfaction and compassion fatigue influence nurses' intention to stay or leave nursing. Identification of compassion satisfaction or fatigue in critical care nurses is important in this high turnover workforce.The aim of this study was to examine factors predicting and contributing to compassion satisfaction and compassion fatigue experienced by critical care nurses in Australian intensive care units.A self-reported cross-sectional survey using an established tool collected data from critical care nurses of two adult Australian intensive care units.Overall, these critical care nurses reported what Professional Quality of Life Scale guidelines designated as 'average' levels of compassion satisfaction and burnout, and 'low' levels of Secondary Traumatic Stress (STS). Compared to Site B, nurses at Site A had significantly higher compassion satisfaction (p=0.008) and lower STS scores (p=0.025), with site significantly predictive for compassion satisfaction (p<0.024) and STS (p<0.002). Nurses with postgraduate qualifications had significantly higher compassion satisfaction scores (p=0.027), and compassion satisfaction significantly increased with increasing duration of practice (p=0.042) as a nurse and in their current ICU (p=0.038). Burnout scores significantly reduced with increasing age, years of tenure and practice; burnout was predicted by lower years of tenure (p<0.016).These critical care nurses revealed profiles that, whilst not in crisis, fell short of the ideal high compassion satisfaction and moderate/low fatigue. More recent tenure flags those potentially at higher risk of compassion fatigue, whilst the better scores associated with postgraduate education and from one site need further exploration. Further research should develop understanding and interventions to enhance compassion satisfaction and support retention of this crucial nursing workforce.
Jakimowicz, S, Perry, L & Lewis, J 2018, 'Insights on compassion and patient-centred nursing in intensive care: A constructivist grounded theory.', Journal of Clinical Nursing, vol. 27, no. 7-8, pp. 1599-1611.View/Download from: UTS OPUS or Publisher's site
To explore patient-centred nursing, compassion satisfaction and compassion fatigue from intensive care nurses' perspectives.Compassion satisfaction and compassion fatigue can influence critical care nurses' decisions to either continue or leave the profession, and could impact the compassionate patient-centred nursing care patients receive during their ICU admission.This qualitative research design was informed by Charmaz's Grounded Theory Constructivist methodology.In-depth interviews were conducted with 21 critical care nurses of two ICUs in Australia during 2016. Interview data were analysed using grounded theory processes.Findings reflected positive and negative impacts on critical care nurses' ability to deal compassionately with their patients. Effects on patient-centred nursing and critical care nurses' own well-being were revealed. A core category of "Expectations" emerged, explaining the tension between critical care nurses' biomedical, clinical skills and knowledge versus compassionate, patient-centred nursing care. This tension was clarified and expanded in subcategories of "Life in the Balance," "Passion and Pressure," "Understanding and Advocacy" and "Tenacity and Fragility".Providing patient-centred nursing may enhance critical care nurses' experience of compassion satisfaction, in turn impacting delivery of compassionate patient-centred nursing to generate a virtuous circle. Critical care nurses who feel respected and supported by their management team and colleagues experience feelings of compassion satisfaction, leading to greater engagement and care towards their patient.Systematically addressing critical care nurses' needs to successfully balance biomedical with compassionate nursing care may lead to greater well-being in the critical care nursing workforce and improve patient experience of intensive care.
Jakimowicz, S, Perry, L & Lewis, J 2017, 'Compassion-satisfaction and compassion-fatigue in Australian intensive care units', Australian Critical Care, vol. 30, no. 2, pp. 127-127.View/Download from: Publisher's site
Jakimowicz, S, Perry, L & Lewis, J 2017, 'An integrative review of supports, facilitators and barriers to patient-centred nursing in the intensive care unit', JOURNAL OF CLINICAL NURSING, vol. 26, no. 23-24, pp. 4153-4171.View/Download from: UTS OPUS or Publisher's site
DiGiacomo, M, Hatano, Y, Phillips, J, Lewis, J, Abernathy, A & Currow, D 2017, 'Caregiver characteristics and bereavement needs: findings from a population study', Palliative Medicine, vol. 31, no. 5, pp. 465-474.View/Download from: UTS OPUS or Publisher's site
Background: Globally, the majority of care for people with life-limiting illnesses is provided by informal caregivers. Identifying characteristics of caregivers that may have unmet needs and negative outcomes can enable provision of better support to facilitate their adjustment.
Aim: We compared characteristics, expressed unmet needs, and outcomes for spousal caregivers, with other caregivers at the end of life, by gender and age.
Design: The South Australian Health Omnibus is an annual, random, face-to-face, cross-sectional survey wherein respondents are asked about end-of-life care.
Setting/Participants: Participants were aged over 15, resided in households in South Australia, and had someone close to them die from a terminal illness in the last five years.
Results: Of the 1,540 respondents who provided hands-on care for someone close at the end of life, 155 were widows/widowers. Bereaved spousal caregivers were more likely to: be older, female, better educated, have lower incomes, less full-time work, English as second language, sought help with grief, and provided more day-to-day care for longer periods. Spousal caregivers were less likely to be willing to take on caregiving again, less able to 'move on' with life, and needed greater emotional support and more information about the illness and services. The only difference between widows and widowers was older age of spouse in women. Younger spousal caregivers perceived greater unmet emotional needs and were significantly less likely to be able to 'move on'.
Conclusions: Spousal caregivers are different from other caregivers, with more intense needs that are not fully met. These have implications for bereavement, health, and social services.
Vongmany, J, Hickman, LD, Lewis, J, Newton, PJ & Phillips, JL 2016, 'Anxiety in chronic heart failure and the risk of increased hospitalisations and mortality: A systematic review.', European Journal of Cardiovascular Nursing.View/Download from: UTS OPUS or Publisher's site
Anxiety is a serious affective mood disorder that affects many chronic heart failure patients. While there is ample evidence that depression increases hospitalisations and mortality in chronic heart failure patients, it is unclear whether this association also exists for anxiety.The purpose of this study was to report on prospective cohort studies investigating anxiety in chronic heart failure patients and its association with hospitalisations and mortality rates. This systematic review aims to improve the current knowledge of anxiety as a potential prognostic predictor in chronic heart failure populations.This systematic review adheres to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement. Studies were identified by accessing electronic databases Embase, Medline, Cumulative Index to Nursing and Allied Health Literature and PsycINFO. Studies were included if they: employed a prospective cohort study design, included chronic heart failure participants with a confirmed clinical diagnosis plus anxiety confirmed by a validated anxiety assessment tool and/or clinical diagnosis and reported longitudinal hospitalisation rates and mortality data in chronic heart failure.Six studies were identified for inclusion. A study investigating hospitalisations and mortality rates found a significant (p<0.05) association solely between hospitalisation and anxiety. Of four studies reporting on hospitalisations alone, only two reported significant associations with anxiety. One study reported rates of mortality alone and identified no significant associations between mortality and anxiety. There was some variation in quality of the studies in regards to their methodology, analysis and reported measures/outcomes, which may have affected the results reported.It is possible that anxiety does predict hospitalisations in chronic heart failure populations, however further research is required to confirm this observation.
Alomari, A, Wilson, V, Davidson, PM & Lewis, J 2015, 'Families, nurses and organisations contributing factors to medication administration error in paediatrics: a literature review', International Practice Development Journal, vol. 5, no. 1, pp. 1-14.View/Download from: UTS OPUS
Background: Medication error is the most common adverse event for hospitalised children and can lead to significant harm. Despite decades of research and implementation of a number of initiatives, the error rates continue to rise, particularly those associated with administration.
Objectives: The objective of this literature review is to explore the factors involving nurses, families and healthcare systems that impact on medication administration errors in paediatric patients.
Design: A review was undertaken of studies that reported on factors that contribute to a rise or fall in medication administration errors, from family, nurse and organisational perspectives. The following databases were searched: Medline, Embase, CINAHL and the Cochrane library. The title, abstract and full article were reviewed for relevance. Articles were excluded if they were not research studies, they related to medications and not medication administration errors or they referred to medical errors rather than medication errors.
Results: A total of 15 studies met the inclusion criteria. The factors contributing to medication administration errors are communication failure between the parents and healthcare professionals, nurse workload, failure to adhere to policy and guidelines, interruptions, inexperience and insufficient nurse education from organisations. Strategies that were reported to reduce errors were double-checking by two nurses, implementing educational sessions, use of computerised prescribing and barcoding administration systems. Yet despite such interventions, errors persist. The review highlighted families that have a central role in caring for the child and therefore are key to the administration process, but have largely been ignored in research studies relating to medication administration.
Conclusions: While there is a consensus about the factors that contribute to errors, sustainable and effective solutions remain elusive. To date, families have not been included a...
DiGiacomo, M, Lewis, J, Phillips, J, Nolan, M & Davidson, PM 2015, 'The business of death: a qualitative study of financial concerns of widowed older women', BMC Women's Health, vol. 15, pp. 1-10.View/Download from: UTS OPUS or Publisher's site
The feminisation of ageing and increasing number of widowed women in contemporary society has significant implications. Older women are at risk of poor health, social, and economic outcomes upon widowhood. The aim of the study was to describe women's experiences in the period soon after their husbands' death, including their financial issues and concerns, and the ways in which these experiences impacted on the transition to widowhood late in life.
This was a longitudinal study using serial in-depth semi-structured interviews with 21 community-dwelling women over the age of 65 in Australia. Verbatim transcripts underwent Interpretive Phenomenological Analysis.
Thematic analysis revealed: 1) administrative burden increases vulnerability; 2) gender roles impact on transitions; and 3) financial adjustments render housing insecurity and health risk. High administrative burden within the context of significant grief and mourning was a defining feature of the early bereavement period. Complicated protracted administrative processes, insensitive interactions, and reminders of loss contributed to distress, anxiety and feelings of demoralisation. Several women identified assumption of household financial management as the most difficult aspect of coping with their husband's death.
Older women may have unmet needs for assistance with administrative, financial, and legal issues immediately following spousal death and potentially for years afterward. Lack of familiarity and absence of instrumental support with financial and legal issues signal the need for policy reform, resources to improve financial literacy in women throughout the life course, increased advocacy, and consideration of different support and service models.
Lewis, J, DiGiacomo, M, Currow, DC & Davidson, PM 2014, 'Social capital in a lower socioeconomic palliative care population: a qualitative investigation of individual, community and civic networks and relations', BMC Palliative Care, vol. 13, no. 30, pp. 1-9.View/Download from: UTS OPUS or Publisher's site
The article reports findings from a qualitative investigation of the needs and experiences of palliative care patients and caregivers who are experiencing financial hardship or disadvantage. This article highlights the individual, community and civic networks and relations relevant to these experiences.
DiGiacomo, M, Lewis, J, Nolan, M, Phillips, JL & Davidson, PM 2013, 'Transitioning From Caregiving to Widowhood', Journal of Pain and Symptom Management, vol. 46, no. 6, pp. 817-825.View/Download from: UTS OPUS or Publisher's site
Older women commonly assume a caregiving role for their husbands at the end of life and are more vulnerable to poorer health, well-being, and social and economic challenges. The aim of this study was to ascertain older women's experiences of spousal caregiving at the end of life and the ways in which this experience impacts on the transition to widowhood.
DiGiacomo, M, Lewis, J, Nolan, MT, Phillips, J & Davidson, PM 2013, 'Health transitions in recently widowed older women: a mixed methods study', BMC Health Services Research, vol. 13, no. 143.View/Download from: UTS OPUS or Publisher's site
Lewis, J, DiGiacomo, M, Luckett, T, Davidson, PM & Currow, D 2013, 'A Social Capital Framework for Palliative Care: Supporting Health and Well-Being for People With Life-Limiting Illness and Their Carers Through Social Relations and Networks', Journal of Pain and Symptom Management, vol. 45, no. 1, pp. 92-103.View/Download from: UTS OPUS or Publisher's site
This paper summarizes the literature on social capital, well-being, and quality of life for key outcomes to inform a model of social capital in palliative care.
Currow, D, Allingham, S, Bird, S, Yates, P, Lewis, J, Dawber, J & Eagar, K 2012, 'Referral patterns and proximity to palliative care inpatient services by level of socio-economic disadvantage. A national study using spatial analysis', BMC Health Services Research, vol. 12, no. 424, pp. 1-14.View/Download from: UTS OPUS or Publisher's site
A range of health outcomes at a population level are related to differences in levels of social disadvantage. Understanding the impact of any such differences in palliative care is important. The aim of this study was to assess, by level of socio-economic disadvantage, referral patterns to specialist palliative care and proximity to inpatient services. This study examined all inpatient and community palliative care services nationally were geocoded (using postcode) to one nationally standardised measure of socio-economic deprivation Socio-Economic Index for Areas (SEIFA; 2006 census data). Referral to palliative care services and characteristics of referrals were described through data collected routinely at clinical encounters. Inpatient location was measured from each person's home postcode, and stratified by socio-economic disadvantage. This study covered July-December 2009 with data from 10,064 patients. People from the highest SEIFA group (least disadvantaged) were significantly less likely to be referred to a specialist palliative care service, likely to be referred closer to death and to have more episodes of inpatient care for longer time. Physical proximity of a persons home to inpatient care showed a gradient with increasing distance by decreasing levels of socio-economic advantage. These data suggest that a simple relationship of low socioeconomic status and poor access to a referral-based specialty such as palliative care does not exist. Different patterns of referral and hence different patterns of care emerge.
Lewis, J, DiGiacomo, M, Currow, D & Davidson, PM 2011, 'Dying in the margins: understanding palliative care and socioeconomic deprivation in the developed world', Journal of Pain and Symptom Management, vol. 42, no. 1, pp. 105-118.View/Download from: UTS OPUS or Publisher's site
Individuals from low socioeconomic (SE) groups have less resources and poorer health outcomes. Understanding the nature of access to appropriate end-of-life care services for this group is important. This article evaluated the literature in the developed world for barriers to access for low SE groups. Electronic databases searched in the review included MEDLINE (1996â2010), CINAHL (1996â2010), PsychINFO (2000â2010), Cochrane Library (2010), and EMBASE (1996â2010). Publications were searched for key terms âsocioeconomic disadvantage,â âsocioeconomic,â âpoverty,â âpoorâ paired with âend-of-life care,â âpalliative care,â âdying,â and âterminal Illness.â Articles were analyzed using existing descriptions for dimensions of access to health services, which include availability, affordability, acceptability, and geographical access. A total of 67 articles were identified for the literature review. Literature describing end-of-life care and low SE status was limited. Findings from the review were summarized under the headings for dimensions of access. Low SE groups experience barriers to access in palliative care services. Identification and evaluation of interventions aimed at reducing this disparity is required.
Bindley, K, Lewis, J, Travaglia, J & DiGiacomo, M 2019, 'Disenfranchised and disadvantaged: Public health implications of a scoping review of social and structural inequity in bereavement following expected death', Public Health Palliative Care International, Leura.
DiGiacomo, M, Lewis, J, Parker, D, Chang, S, Koirala, B & Phillips, J 2018, 'Healthy Ageing, Yet Unmet Need in Australian War Widows: A Sequential Mixed Methods Study', International Council of Women's Health Issues Congress, Hong Kong.
DiGiacomo, M, Lewis, J, Phillips, J, Davidson, PM & Nolan, M 2015, 'The role of gender, administrative burden, and financial concerns in the transition to widowhood; a qualitative study', Australian Association of Gerontology, Alice Springs.
DiGiacomo, M, Davidson, PM, Lewis, J, Phillips, J & Nolan, M 2012, 'Early Widowhood in Older Women: A Time of Vulnerability and Health Stress', International Council on Women's Health Issues (ICOWHI) Congress, Bangkok.
Lewis, J & Parker, D Palliative CAre Australia 2017, Palliative Care and Dementia Paper number 43, A report for Dementia Australia, prepared in collaboration with Palliative Care Australia, Palliative care Australia, no. 43, pp. 1-33, Australia.