Deborah is the Professor of Aged Care (Dementia) in the Faculty of Health. She has received over $35 million in research funding. Her primary areas of research are palliative care for older people, dementia and health technology and services evaluation in aged care. She is the UTS lead academic for the Deakin ARC Research Hub for Digital Enhanced Living.
Deborah is President of Palliative Care NSW, Board Director of Carrington Care, Board Director Leigh Place and an active member of The Australian Association of Gerontology and Palliative Care Nurses Australia. Deborah is Co-Chair of the Workforce and Education Age and Ageing Clinical Academic Group (SPHERE), Academic Lead of the Quality of Life Palliative Care Clinical Academic Group and National Policy Chair of Ageing for the Australian College of Nursing.
Australian Association of Gerontology
Palliative Care NSW
Australian College of Nursing
Palliative Care Nurses Australia
Can supervise: YES
Moyle, W, Parker, D & Bramble, M 2014, Care of Older Adults A Strengths-based Approach, Cambridge University Press.
By taking a strengths-based approach, this book encourages nursing practice with a focus on individuals' potential and capacities rather than their limits.
Miller-Lewis, L, Tieman, J, Rawlings, D, Parker, D & Sanderson, C 2020, 'Can Exposure to Online Conversations About Death and Dying Influence Death Competence? An Exploratory Study Within an Australian Massive Open Online Course', Omega: Journal of Death and Dying, vol. 81, no. 2, pp. 242-271.View/Download from: Publisher's site
© 2018, The Author(s) 2018. A Massive Open Online Course, Dying2Learn, was designed to foster community death conversations and strengthen community awareness of palliative care and death as a normal process. This exploratory study used a pre–post prospective design to determine if participation in Dying2Learn and exposure to online conversations about death and dying resulted in any significant influence on death competence in 134 participants who completed the Coping-with-Death-Scale both at the beginning and end of the course in 2016. Death competence refers to a range of attitudes and capabilities people have for dealing with death. Results at the end of the course indicated that engagement in Dying2Learn led to significant improvements in death competence scores over time (medium-to-large effect size). The positive impact was greater for those who completed more of the course, and effectiveness did not depend on sociodemographic characteristics. In conclusion, this study found that an online learning platform in the form of a Massive Open Online Course could engage community members in meaningful social discussion about death and dying, and that exposure to these conversations was beneficial for all participants regardless of previous exposure to death. Further exploration is required to determine whether this change in death competence will have an impact on participant's behavior in the community regarding death conversations and preparedness.
Visser, M, Wong, S, Simonetti, S, Hazelton, JL, Devenney, E, Ahmed, RM, van Langenhove, T, Parker, D, Burrell, JR, Hodges, JR & Kumfor, F 2020, 'Using a second-person approach to identify disease-specific profiles of social behavior in frontotemporal dementia and Alzheimer's disease', Cortex, vol. 133, pp. 236-246.View/Download from: Publisher's site
Watson, K, Stevens, C, Parker, D, Peipers, D, Leahy, A, Jai, Y & Radnan, M 2020, 'Evaluating Liquid Galaxy-based Reminiscence Therapy forpeople with dementia: Time-travelling with technology(TTT)', Ageing and Society.
Kochovska, S, Garcia, MV, Bunn, F, Goodman, C, Luckett, T, Parker, D, Phillips, JL, Sampson, EL, van der Steen, JT & Agar, MR 2020, 'Components of palliative care interventions addressing the needs of people with dementia living in long-term care: A systematic review.', Palliative medicine, vol. 34, no. 4, pp. 454-492.View/Download from: Publisher's site
BACKGROUND:People with dementia requiring palliative care have multiple needs, which are amplified in long-term care settings. The European Association for Palliative Care White Paper offers recommendations for optimal palliative care in dementia integral for this population, providing useful guidance to inform interventions addressing their specific needs. AIM:The aim of this study is to describe the components of palliative care interventions for people with dementia in long-term care focusing on shared decision-making and examine their alignment to the European Association for Palliative Care domains of care. DESIGN:Systematic review with narrative synthesis (PROSPERO ID: CRD42018095649). DATA SOURCES:Four databases (MEDLINE, CINAHL, PsycINFO and CENTRAL) were searched (earliest records - July 2019) for peer-reviewed articles and protocols in English, reporting on palliative care interventions for people with dementia in long-term care, addressing European Association for Palliative Care Domains 2 (person-centred) or 3 (setting care goals) and ⩾1 other domain. RESULTS:Fifty-one papers were included, reporting on 32 studies. For each domain (1-10), there were interventions found aiming to address its goal, although no single intervention addressed all domains. Domain 7 (symptom management; n = 19), 6 (avoiding overly aggressive treatment; n = 18) and 10 (education; n = 17) were the most commonly addressed; Domain 5 (prognostication; n = 7) and 4 (continuity of care; n = 2) were the least addressed. CONCLUSION:Almost all domains were addressed across all interventions currently offered for this population to various degrees, but not within a singular intervention. Future research optimally needs to be theory driven when developing dementia-specific interventions at the end of life, with the European Association for Palliative Care domains serving as a foundation to inform the best care for this population.
Kong, AC, George, A, Villarosa, AR, Agar, M, Harlum, J, Wiltshire, J, Srinivas, R & Parker, D 2020, 'Perceptions of nurses towards oral health in palliative care: A qualitative study', Collegian.View/Download from: Publisher's site
© 2020 Australian College of Nursing Ltd Background: Oral health problems among people receiving palliative care are common and can significantly affect quality of life. Nurses are at the frontline of palliative care in Australia. However, how optimal oral health care is addressed in clinical practice by palliative nurses is not known. Aim: To explore the perceptions of nurses working in Australian palliative care settings to determine the acceptability, challenges and recommendations that need to be considered to develop and implement an oral health care model in palliative care settings. Methods: Two focus groups were conducted with community (n = 8) and inpatient nurses (n = 10) working in urban palliative care settings. Findings: Four main themes were developed through consensus: 1) Oral health is important in the palliative care setting; 2) Additional training could enhance what nurses already do; 3) Barriers to receiving oral care: a structural issue; 4) Exploring alternative pathways to dental services. Discussion: Nurses recognised the importance of oral health in palliative care; however, the paucity of set protocols based on existing guidelines meant that oral care was often unstructured. Systemic factors reduced the number of available options for people receiving palliative care to access professional dental treatment. Although alternative solutions, including teledentistry services, were explored, there were some constraints. Conclusion: A palliative care oral health model of care would need to integrate existing formal guidelines into a comprehensive framework specific for palliative care nurses and develop palliative care oral health training for them taking into consideration existing barriers for people to receive professional dental treatment.
Lee, W, Pulbrook, M, Sheehan, C, Kochovska, S, Chang, S, Hosie, A, Lobb, E, Parker, D, Draper, B, Agar, MR & Currow, DC 2020, 'Clinically Significant Depressive Symptoms Are Prevalent in People With Extremely Short Prognoses—A Systematic Review', Journal of Pain and Symptom Management.View/Download from: Publisher's site
© 2020 American Academy of Hospice and Palliative Medicine Context: Currently, systematic evidence of the prevalence of clinically significant depressive symptoms in people with extremely short prognoses is not available to inform its global burden, assessment, and management. Objectives: To determine the prevalence of clinically significant depressive symptoms in people with advanced life-limiting illnesses and extremely short prognoses (range of days to weeks). Methods: A systematic review and meta-analysis (random-effects model) were performed (PROSPERO: CRD42019125119). MEDLINE, Embase, PsycINFO, CINAHL, and CareSearch were searched for studies (1994–2019). Data were screened for the prevalence of clinically significant depressive symptoms (assessed using validated depression-specific screening tools or diagnostic criteria) of adults with advanced life-limiting illnesses and extremely short prognoses (defined by survival or functional status). Quality assessment was performed using the Joanna Briggs Institute Systematic Reviews Checklist for Prevalence Studies for individual studies and Grading of Recommendations Assessment, Development and Evaluation (GRADE) across studies. Results: Thirteen studies were included. The overall pooled prevalence of clinically significant depressive symptoms in adults with extremely short prognoses (n = 10 studies; extremely short prognoses: N = 905) using depression-specific screening tools was 50% (95% CI: 29%–70%; I2 = 97.6%). Prevalence of major and minor depression was 10% (95% CI: 4%–16%) and 5% (95% CI: 2%–8%), respectively. Major limitations included high heterogeneity, selection bias, and small sample sizes in individual studies. Conclusions: Clinically, significant depressive symptoms were prevalent in people with advanced life-limiting illnesses and extremely short prognoses. Clinicians need to be proactive in the recognition and assessment of these symptoms to allow for timely intervention.
Hosie, A, Kochovska, S, Ries, N, Gilmore, I, Parker, D, Sinclair, C, Sheehan, C, Collier, A, Caplan, GA, Visser, M, Xu, X, Lobb, E, Sheahan, L, Brown, L, Lee, W, Sanderson, CR, Amgarth-Duff, I, Green, A, Edwards, L & Agar, MR 2020, 'Older Persons' and Their Caregivers' Perspectives and Experiences of Research Participation With Impaired Decision-Making Capacity: A Scoping Review.', The Gerontologist.View/Download from: Publisher's site
BACKGROUND AND OBJECTIVES:Human research ethics statements support equitable inclusion of diverse groups. Yet older people are under-represented in clinical research, especially those with impaired decision-making capacity. The aim of this study was to identify perspectives and experiences of older persons and their caregivers of research participation with impaired decision-making capacity. RESEARCH DESIGN AND METHODS:Scoping review of literature and online sources in January-February 2019 (updated June 2020) according to Joanna Briggs Institute methodology and PRISMA Extension for Scoping Reviews. English-language peer-reviewed research articles and Australian online narratives were included. Data were tabulated and narratively synthesized. RESULTS:From 4171 database records and 93 online resources, 22 articles (2000-2019, 82% United States, 16 first authors) and one YouTube webinar (2018) were initially included; updated searches yielded an additional article (2020) and YouTube webinar (2020). Studies were heterogeneous in terminology, methods and foci, with hypothetical scenarios, quantitative analyses and examination of proxy consent predominating. Participants (n=7331) were older persons (71%), caregivers of older persons with dementia/cognitive impairment (23%) and older persons with dementia/cognitive impairment (6%). Synthesis identified two themes: willingness to participate and decision-making approaches. DISCUSSION AND IMPLICATIONS:Research participation by older persons with dementia may be optimized through reducing risks and burdens and increasing benefits for participants, greater consumer input into study development, and shared and supported decision-making. Older persons' and caregivers' perspectives and experiences of research participation with impaired decision-making capacity require investigation in a greater range of countries and conditions other than dementia, and dissemination through more varied media.
Hickman, L, Ferguson, C, Davidson, PM, Allida, S, Inglis, S, Parker, D & Agar, M 2020, 'Key elements of interventions for heart failure patients with mild cognitive impairment or dementia: A systematic review.', European journal of cardiovascular nursing : journal of the Working Group on Cardiovascular Nursing of the European Society of Cardiology, vol. 19, no. 1, pp. 8-19.View/Download from: Publisher's site
BACKGROUND:The purpose of this systematic review was to (a) examine the effects of interventions delivered by a heart failure professional for mild cognitive impairment and dementia on cognitive function, memory, working memory, instrumental activities of daily living, heart failure knowledge, self-care, quality of life and depression; and (b) identify the successful elements of these strategies for heart failure patients with mild cognitive impairment or dementia. METHODS AND RESULTS:During March 2018, an electronic search of databases including CINAHL, MEDLINE, EMBASE and PsycINFO was conducted. All randomised controlled trials, which examined an intervention strategy to help heart failure patients with mild cognitive impairment or dementia cope with self-care, were included. An initial search yielded 1622 citations, six studies were included (N= 595 participants, mean age 68 years). There were no significant improvements in cognitive function and depression. However, significant improvements were seen in memory (p=0.015), working memory (p=0.029) and instrumental activities of daily living (p=0.006). Nurse led interventions improved the patient's heart failure knowledge (p=0.001), self-care (p<0.05) and quality of life (p=0.029). Key elements of these interventions include brain exercises, for example, syllable stacks, individualised assessment and customised education, personalised self-care schedule development, interactive problem-solving training on scenarios and association techniques to prompt self-care activities. CONCLUSIONS:Modest evidence for nurse led interventions among heart failure patients with mild cognitive impairment or dementia was identified. These results must be interpreted with caution in light of the limited number of available included studies.
Xu, X, Ling, M, Inglis, SC, Hickman, L & Parker, D 2020, 'Eating and healthy ageing: a longitudinal study on the association between food consumption, memory loss and its comorbidities.', International journal of public health, vol. 65, no. 5, pp. 571-582.View/Download from: Publisher's site
OBJECTIVES:To explore the longitudinal association between food groups and memory loss and comorbid heart disease and diabetes (both Type 1 and 2) for people living in New South Wales, Australia. METHODS:We assessed 139,096 adults (aged 45 years and over) from the 45 and Up Study who completed both baseline (2006-2009) and follow-up (2012-2015) surveys. Mixed linear and generalized estimating equation models were used to examine the longitudinal associations. RESULTS:High consumption of fruit, vegetable and protein-rich food associated with lower odds of memory loss. High consumption of fruit and vegetables also associated with lower odds of comorbid heart disease (p ≤ 0.001). People who aged ≥ 80 years with low consumption of cereals had the highest odds of memory loss and comorbid heart disease than people in other age groups (p < 0.01). CONCLUSIONS:The results highlighted the longitudinal association of fruit and vegetable in relation to memory loss and comorbid heart disease. Age effects on cereals consumption which have an influence on memory loss and comorbid heart disease.
Kaasalainen, S, Sussman, T, McCleary, L, Thompson, G, Hunter, PV, Wickson-Griffiths, A, Cook, R, Bello-Haas, VD, Venturato, L, Papaioannou, A, You, J & Parker, D 2019, 'A Stakeholder Analysis of the Strengthening a Palliative Approach in Long-Term Care Model', Nursing leadership (Toronto, Ont.), vol. 32, no. 3, pp. 27-39.View/Download from: Publisher's site
Copyright © 2019 Longwoods Publishing. OBJECTIVE: The purpose of this study was to conduct a stakeholder analysis of the strengthening a palliative approach to long-term care (SPA-LTC) model and refine it based on feedback from long-term care (LTC) residents and their families, staff, researchers and decision makers. METHODS: We used a mixed-methods design to conduct a stakeholder analysis of the SPA-LTC model that consisted of two sequential components: qualitative focus groups with LTC staff followed by a quantitative survey with key stakeholders. RESULTS: Twenty-one LTC staff provided feedback about the SPA-LTC model after residents relocated to LTC, during advanced illness and at end of life and in the period of grief and bereavement. This feedback helped to guide revisions of the model. According to the survey results, the SPA-LTC model was well received by 35 stakeholders, but its feasibility was questioned. CONCLUSION: The Canadian SPA-LTC model is evidence based and endorsed by LTC staff and stakeholders. Efforts are needed to determine the feasibility of implementing the model to ensure that residents' needs are made a priority while in LTC.
Kaasalainen, S, Sussman, T, McCleary, L, Thompson, G, Hunter, PV, Wickson-Griffiths, A, Cook, R, Bello-Haas, VD, Venturato, L, Papaioannou, A, You, J & Parker, D 2019, 'Palliative Care Models in Long-Term Care: A Scoping Review.', Nursing leadership (Toronto, Ont.), vol. 32, no. 3, pp. 8-26.View/Download from: Publisher's site
OBJECTIVE:The goal of this scoping review was to identify existing palliative models in long-term care (LTC) homes and differentiate between the key components of each in terms of training/capacity-building strategies; resident, family and staff support; and advance care planning (ACP) and goals-of-care discussions. METHODS:We conducted a scoping review based on established methods to summarize the international literature on palliative models and programs for LTC. We analyzed the data using tabular summaries and content analysis. RESULTS:We extracted data from 46 articles related to palliative programs, training/capacity building, family support, ACP and goals of care. Study results highlighted that three key components are needed in a palliative program in LTC: (1) training and capacity building; (2) support for residents, family and staff; and (3) ACP, goals-of-care discussion and informed consent. CONCLUSION:This scoping review provided important information about key components to be included in a palliative program in LTC. Future work is needed to develop a model that suits the unique characteristics in the Canadian context.
Meller, N, Parker, D, Hatcher, D & Sheehan, A 2019, 'Grief experiences of nurses after the death of an adult patient in an acute hospital setting: An integrative review of literature', Collegian, vol. 26, no. 2, pp. 302-310.View/Download from: Publisher's site
© 2018 Australian College of Nursing Ltd Objective: This integrative review explores current published literature examining grief experiences of nurses who work in hospital settings after the death of a patient in their care and the factors that may impact nurses experiencing grief within the workplace. Background: Healthcare workers such as nurses are required to be competent, skilled and resilient in preparation for the emotional variables and professional responsibilities when managing a patient death. There are publications exploring nurse's grief experiences in palliative care, paediatric nursing or oncology settings, but to date, there is limited relevant literature identifying or exploring grief experiences of nurses working in other speciality areas in a hospital setting after the death of a patient in their care. Methods: Comprehensive online database searches of CINAHL, EBSCO Host, PubMED, MEDLINE, Scopus, Joanna Briggs Institute (JBI) and Google Scholar was undertaken using key terms of articles published between 1990–2017. Screening of 317 articles resulted in 5 included for this review. Data analysis was guided by Whittemore and Knafl's five stage process. Findings: Three main themes were identified were 'the impact of formative death events in clinical practice' 'managing personal grief reactions and the factors that influenced these reactions' and 'the significance of colleague support when experiencing a patient death'. Conclusion: Personal grief responses displayed by a nurse after a patient has died can have both a positive and negative influence on their professional behaviour in the workplace. It also has the potential for grief complications for individual nurses, which highlights the importance of workplace support for nurses when making clinical decisions after the death of a patient.
Miller-Lewis, L, Tieman, J, Rawlings, D, Sanderson, C & Parker, D 2019, 'Correlates of perceived death competence: What role does meaning-in-life and quality-of-life play?', Palliative and Supportive Care, vol. 17, no. 5, pp. 550-560.View/Download from: Publisher's site
© Cambridge University Press 2019. ObjectiveUnderstanding factors that are associated with more adaptive death attitudes and competencies can inspire future health-promoting palliative care strategies and inform approaches to training and development for health professionals. The potential importance of meaning, purpose, quality, and values in life for promoting adaptive death attitudes has been highlighted, but there is limited research in this area, particularly in relation to death competence. The purpose of this cross-sectional study was to develop an understanding of demographic and life-related factors associated with perceived death competence, such as meaning in life and quality of life.MethodDuring the course enrollment period of a Massive-Online-Open-Course about death and dying, 277 participants completed questionnaires on death competence, meaning in life, quality of life, and sociodemographic background.ResultFindings indicated that greater presence of meaning in life, quality of life, age, death experience, and carer experience were each statistically significant unique predictors of death competence scores. Life-related variables were more strongly associated with death competence than demographic variables. Bereavement experience and experience caring for the dying was associated with greater death competence, but there were no differences on death competence between health professionals and the general community. Above all other factors, the presence of meaning in life was the strongest predictor of higher perceived competence in coping with death.Significance of resultsThe findings demonstrate important interconnections between our attitudes about life and death. Knowledge of factors associated with poorer death competence may help identify those at risk of greater distress when facing death, and might prove useful additions to bereavement risk assessments. Understanding factors associated with greater death competence in health professionals an...
Sanderson, C, Miller-Lewis, L, Rawlings, D, Parker, D & Tieman, J 2019, '"I want to die in my sleep"-how people think about death, choice, and control: Findings from a Massive Open Online Course', Annals of Palliative Medicine, vol. 8, no. 4, pp. 411-419.View/Download from: Publisher's site
© Annals of Palliative Medicine. Background: Complex social and ethical debates about voluntary assisted dying (euthanasia), palliative care, and advance care planning are presently being worked through in many developed countries, and the policy implications of these discussions for palliative care are potentially very significant. However, community attitudes to death and dying are complex, multilayered, and contain many mixed messages. Methods: Participants posted comments in a Massive Open Online Course (MOOC) on death and dying, entitled Dying2Learn. This provided an opportunity to explore societal and personal attitudes to wishes and beliefs around death and dying. For one activity in the MOOC, participants responded to a question asking them about "the best way to go". Results: Responses were subjected to thematic analysis, during which they were coded for conceptual categories. This analysis showed how acceptance of death as a natural and normal process, and as a shared event that affects a whole social network, may nonetheless be accompanied by deep reluctance to address the physical process of dying (i.e., "avoidant acceptance"). Conclusions: Our findings highlighted a desire for choice and control in relation to dying, which is a common element in discussions of both advance care planning and palliative care. This same focus may contribute to a perception that voluntary assisted dying/euthanasia is a necessary strategy for ensuring that people have control over their dying process. We discuss the paradox of individuals wanting to have control whilst preferring not to know that they are dying.
Trad, W, Flowers, K, Caldwell, J, Sousa, MS, Vigh, G, Lizarondo, L, Gaudin, J, Hooper, D & Parker, D 2019, 'Nursing assessment and management of incontinence among medical and surgical adult patients in a tertiary hospital: a best practice implementation project.', JBI database of systematic reviews and implementation reports, vol. 17, no. 12, pp. 2578-2590.View/Download from: Publisher's site
OBJECTIVES:The objectives of this implementation project were to review the nursing assessment and management of adult patients with urinary and fecal incontinence, and to develop local guidelines and ward-based continence assessment tools to assist nursing staff in assessing and managing incontinence. INTRODUCTION:Urinary or fecal incontinence in acute care hospitals is a growing issue that can lead to constipation, depression, breakdown of skin integrity, increased nursing home placement of older patients, increased length of hospital stay, and escalated healthcare costs. In many cases, incontinence can be treated and managed effectively; however, it is poorly understood and under-prioritized in many hospital settings. METHODS:A pre-post intervention chart audit was conducted to review compliance with 10 best-practice criteria for incontinence assessment and management. Following baseline data analysis, barriers to compliance with the criteria were identified and subsequently addressed using targeted strategies. The project utilized the JBI Practical Application of Clinical Evidence System (PACES) and the Getting Research into Practice (GRiP) tools. RESULTS:Education on continence strategies was delivered to nursing staff, which resulted in improved compliance for all audit criteria. There were notable improvements in the nursing documentation, and assessment and management of patients with urinary and/or fecal incontinence in the post-intervention analysis. CONCLUSIONS:The results demonstrate that nursing education and formalized assessment pathways in an acute setting can improve nursing compliance with the assessment and management of patients with either urinary or fecal incontinence to ensure safe, compassionate and person-centered care.
Xu, X, Parker, D, Inglis, SC & Byles, J 2019, 'Can regular long-term breakfast cereals consumption benefits lower cardiovascular diseases and diabetes risk? A longitudinal population-based study.', Annals of Epidemiology, vol. 37, pp. 43-50.e3.View/Download from: Publisher's site
PURPOSE:Studies indicate breakfast cereals may reduce the risk of overweight, cardiovascular diseases, and diabetes, but a limited number of longitudinal studies have explored these relationships, indicating the need for further assessment. METHODS:We used 45 and Up Study data to examine the longitudinal association between breakfast cereals (and different categories of cereals) and heart disease, stroke, and diabetes. Dietary consumption was assessed by a short food frequency questionnaire. Diagnosed heart disease, stroke, and diabetes were self-reported. Generalized estimating equation models were used to examine the longitudinal associations. RESULTS:Of a total of 142,503 participants (aged 45 years and older), people in the older age group (aged 80 or older) had significantly higher breakfast cereal consumption (P < .001) than those in the younger age group (aged 45-64 years). A significantly inverse association was found between breakfast muesli and heart disease, stroke, and diabetes across all age groups. Associations between other categories of breakfast cereals (biscuit, bran, and oat cereals) and these three diseases differed by age groups. A positive association was found between oat cereals and diabetes for people in the younger age groups (aged 80 years and younger), but not for people in the older age group (aged 80 years and older). CONCLUSIONS:The benefit of breakfast muesli consumption was highlighted in prevention of these three diseases. The result suggests that age-specific dietary guidelines, with a particular focus on the types of breakfast cereals consumption in prevention of chronic diseases for older people need to be developed.
Sanderson, C, Sheahan, L, Kochovska, S, Luckett, T, Parker, D, Butow, P & Agar, M 2019, 'Re-defining moral distress: A systematic review and critical re-appraisal of the argument-based bioethics literature', Clinical Ethics, vol. 14, no. 4, pp. 195-210.View/Download from: Publisher's site
© The Author(s) 2019. The concept of moral distress comes from nursing ethics, and was initially defined as '...when one knows the right thing to do, but institutional constraints make it nearly impossible to pursue the right course of action'. There is a large body of literature associated with moral distress, yet multiple definitions now exist, significantly limiting its usefulness. We undertook a systematic review of the argument-based bioethics literature on this topic as the basis for a critical appraisal, identifying 55 papers for analysis. We found that moral distress is most frequently framed around individual experiences of distress in relation to local practices and constraints, and understood in terms of power relations and workplace hierarchies. This understanding is directly derived from, and often still seen as specific to, nursing. Frequently the perspective of the morally distressed individual is privileged. Understandings of moral distress have evolved towards an 'occupational health approach', with the assumption that moral distress should be measured and prevented. Counter-perspectives were identified, highlighting conceptual problems. Based on our review, we propose a redefinition of moral distress: 'Ethical unease or disquiet resulting from a situation where a clinician believes they have contributed to avoidable patient or community harm through their involvement in an action, inaction or decision that conflicts with their own values'. This definition is specific enough for research use, anchored in clinicians' professional responsibilities and concerns about harms to patients, framed relationally rather than hierarchically, and amenable to multiple perspectives on any given morally distressing situation.
Durepos, P, Kaasalainen, S, Sussman, T, Parker, D, Brazil, K, Mintzberg, S & Te, A 2018, 'Family care conferences in long-term care: Exploring content and processes in end-of-life communication', Palliative and Supportive Care, vol. 16, no. 5, pp. 590-601.View/Download from: Publisher's site
Copyright © Cambridge University Press 2017 Objective:: End-of-life (EoL) communication in long-term care (LTC) homes is often inadequate and delayed, leaving residents dying with unknown preferences or goals of care. Poor communication with staff contributes to families feeling unprepared, distressed, and dissatisfied with care. Family care conferences (FCCs) aim to increase structured systematic communication around goals and plans for the end of life. As part of the Strengthening a Palliative Approach to Care (SPA–LTC) project, FCCs were implemented in four LTC sites in Ontario, Canada. The purpose of this substudy was to examine FCC content and such guiding processes as documentation and multidisciplinary staff participation. Method:: A total of 24 FCCs were held for residents with a Palliative Performance Scale score of 40% (nearing death). Data were collected from conference forms (i.e., Family Questionnaires, Care Plan Conference Summaries), site-specific electronic chart documents, and fieldnotes. Directed content analysis of data was informed by the Canadian Hospice Palliative Care Association's Square of Care Model, which describes eight domains of care: disease management, physical, psychological, social, practical, spiritual, EoL, and loss/bereavement. Results:: The FCCs addressed an average of 71% of the content domains, with physical and EoL care addressed most frequently and loss/bereavement addressed the least. Two goals and five interventions were documented and planned on average per FCC. Examination of the processes supporting EoL communication found: (1) advantages to using FCC forms versus electronic charts; and (2) high levels of multidisciplinary participation overall but limited participation of personal support workers (PSWs) and physicians. Significance of Results:: Communication around the end of life in LTC can be supported through the use of FCCs. Description of content and FCC processes provides guidance to persons implementing FCCs....
Nunan, S, Brown Wilson, C, Henwood, T & Parker, D 2018, 'Fall risk assessment tools for use among older adults in long-term care settings: A systematic review of the literature', Australasian Journal on Ageing, vol. 37, no. 1, pp. 23-33.View/Download from: Publisher's site
© 2017 AJA Inc. Objective: To conduct a systematic review of published fall risk assessment tools (FRATs) tested for predictive validity among older adults in long-term care (LTC). Methods: A systematic search was conducted using five databases. Only studies reporting on sensitivity and specificity values, conducted in LTC on populations primarily aged over 60 years, were considered. Results: Fifteen papers were included and three different categories of FRATs emerged: multifactorial assessment tools, functional mobility assessments and algorithms. Several FRATs showed moderate-to-good predictive validity and reliability, with the Modified Fall Assessment Tool and the Peninsula Health Falls Risk Assessment Tool (PHFRAT) also demonstrating good feasibility. Conclusion: Evidence for the best choice of FRAT for use in LTC remains limited. Further research is warranted for the PHFRAT, recommended for use in LTC by best practice guidelines, before its establishment as the tool of choice for these clinical settings.
Tieman, J, Miller-Lewis, L, Rawlings, D, Parker, D & Sanderson, C 2018, 'The contribution of a MOOC to community discussions around death and dying', BMC Palliative Care, vol. 17, no. 1.View/Download from: Publisher's site
© 2018 The Author(s). Background: Advances in medicine have helped many to live longer lives and to be able to meet health challenges. However death rates are anticipated to increase given the ageing population and chronic disease progression. Being able to talk about death is seen to be important in normalising death as part of life and supporting preparedness for death. Massive Open Online Courses (MOOCs) provide opportunities for the community to engage in collaborative learning. A 5 week MOOC was developed covering four main topics (language and humour, representations of death, medicalisation of dying, and digital dying) aiming: To enable participants to openly and supportively discuss and learn about issues around living, death and dying, To explore the normally unheard opinions and views of Australians around death and dying, and To determine what effect online learning and discussions offered through the MOOC had on participants' feelings and attitudes towards death and dying. Methods: Data was captured on engagement rates in the various MOOC activities. Death Attitudes were measured by five items representing the MOOC's learning objectives and completed at enrolment and conclusion. MOOC Satisfaction was measured with six items at the end of the MOOC. Descriptive statistics were produced for each variable and Chi-Square Tests of Independence assessed the extent of the relationship between categorical variables. Socio-demographic variables were examined as predictors of the outcome variables of MOOC engagement, MOOC satisfaction, and death attitudes. Ethical approval was received from Flinders University Social and Behavioural Research Ethics Committee (Project No. 7247). Results: One thousand one hundred fifty six people enrolled in the Dying2Learn MOOC with 895 participating in some way. Enrolees were primarily female (92.1%). Age ranged from 16 to 84 (mean = 49.5, SD = 12.3). MOOC satisfaction scores were high. Responses to the experience of participati...
Yang, L, Jiang, Y, Xu, S, Bao, L, Parker, D, Xu, X & Li, J 2018, 'Evaluation of frailty status among older people living in urban communities by Edmonton Frail Scale in Wuhu, China: a cross-sectional study.', Contemporary nurse, vol. 54, no. 6, pp. 630-639.View/Download from: Publisher's site
BACKGROUND:Few studies have explored the factors that are associated with frailty among older people. OBJECTIVE:To investigate the frailty status and examine the sociodemographic factors that are associated with of older peoples' frailty status in China. DESIGN:Cross-sectional study. METHODS:We used convenience sampling to recruit the participants (aged 60 and above) from four communities in an urban area of Wuhu, Anhui, China. Participants completed a questionnaire which included the Edmonton Frail Scale (EFS) and sociodemographic factorsWe used convenience sampling to recruit the participants (aged 60 and above) from four communities in an urban area of Wuhu, Anhui, China. Participants completed a questionnaire which included the Edmonton Frail Scale (EFS) and sociodemographic factors. RESULTS:Of 306 participants, the percentage of participants with a robust score (0-4) on the EFS was 71.9%, 14.1% had an apparently vulnerable score (5-6), and 14.0% had a frail score (7-17). Age, chronic disease status and marital status were significantly associated with frailty. CONCLUSIONS:There are a high percentage of frail older Chinese adults in the urban area. The present study findings could provide better understanding of the factors associated with frailty status of this population.
Xu, X, Parker, D, Shi, Z, Byles, J, Hall, J & Hickman, L 2018, 'Dietary Pattern, Hypertension and Cognitive Function in an Older Population: 10-Year Longitudinal Survey', Frontiers in Public Health, vol. 6, no. 201, pp. 1-13.View/Download from: Publisher's site
Background: There is a paucity of studies that have explored the association between dietary pattern and cognitive function, and whether there is an interaction between dietary pattern and hypertension in relation to older people's cognitive functioning.
Methods: We analyzed data from the China Health and Nutrition (CHNS) survey. Dietary data have been collected since 1991, and cognitive function interview data were collected between 1997 and 2006. We analyzed ten years of data, including 4,847 participants with 10,658 observations (aged ≥55 years). Exploratory factor analysis was used to identify dietary patterns. Cognitive function measures include cognitive global scores and verbal memory scores. Linear mixed models were used to investigate the association between dietary patterns, hypertension and cognitive function.
Results: Three dietary patterns were identified by factor analysis, named "Traditional Chinese," "Protein-rich," and "Starch-rich" dietary pattern. A Protein-rich dietary pattern (high intake of milk, eggs and soymilk) was significantly associated with higher cognitive global scores and verbal memory scores, while the starch-rich dietary pattern (high intake of salted vegetable and legumes) was significantly associated with lower cognitive global and verbal memory scores. In addition, we found that participants with hypertension were independently associated with significant low cognitive function.
Conclusion: The study reinforces the importance of diet in preventing cognitive decline among the older population. Identification of older populations who had hypertension should be targeted in intervention studies to maintain their cognitive health.
Burston, A, Eley, R, Parker, D & Tuckett, A 2017, 'Validation of an instrument to measure moral distress within the Australian residential and community care environments', International Journal of Older People Nursing, vol. 12, no. 2.View/Download from: Publisher's site
© 2016 John Wiley & Sons Ltd Aim and objectives: The aim of this study was to gain insight into the experience of moral distress within the aged care workforce. The objective of this study was to use and validate an existing instrument to measure moral distress within the aged care setting. Background: Moral distress, a phenomenon associated with worker satisfaction and retention, is common within nursing. Instruments to measure moral distress exist; however, there are no validated instruments to measure moral distress within an aged care setting. Design and method: An existing instrument, the Moral Distress Scale (Revised) was identified and amended. Amendments were subject to expert review for face and content validity. Data were collected from aged care nurses working in residential and community aged care, in Australia. Reliability was assessed using Cronbach's alpha with exploratory factor analysis undertaken for construct validity. Results: 106 participants completed the survey, 93 (87.7%) identified as female and 13 (12.3%) male. Participants ranged in age from 21 to 73 years, with a mean time working in nursing of 20.6 years. The frequency component of the instrument demonstrated an alpha of 0.89, the intensity component 0.95 and the instrument as a whole 0.94. Three factors were identified and labelled as: Quality of Care, Capacity of Team and Professional Practice. Mean scores indicate a low occurrence of moral distress, but this distress, when experienced, was felt with a moderate level of intensity. Primary causes of moral distress were insufficient staff competency levels, poor quality care because of poor communication and delays in implementing palliation. Conclusion: The instrument demonstrates validity and reliability within the Australian aged care setting. Further analysis with larger populations is required to support these findings. Implications for practice: Australian aged care workers do experience moral distress. They suffer adverse con...
Cho, CM, Parker, D & Blyth, S 2017, 'COMMUNITY BASED HOME VISITING SERVICE IN KOREA: CITY OF GWANGMYEONG', Australian nursing & midwifery journal, vol. 24, no. 7, p. 38.
There has been growing interest in enhancing the quality of life of the economically vulnerable through programs aimed at improving the equality of and accessibility to public health services for these people.
Kaasalainen, S, Sussman, T, Bui, M, Akhtar-Danesh, N, Laporte, RD, McCleary, L, Wickson Griffiths, A, Brazil, K, Parker, D, Dal Bello-Haas, V, Papaioannou, A & O Leary, J 2017, 'What are the differences among occupational groups related to their palliative care-specific educational needs and intensity of interprofessional collaboration in long-term care homes?', BMC Palliative Care, vol. 16, no. 1, pp. 1-8.View/Download from: Publisher's site
© 2017 The Author(s). Background: The purpose of this study was to compare the differences across occupational groups related to their end-of-life care-specific educational needs and reported intensity of interprofessional collaboration in long-term care (LTC) homes. Methods: A cross-sectional survey, based on two questionnaires, was administered at four LTC homes in Ontario, Canada using a modified Dilman's approach. The first questionnaire, End of Life Professional Caregiver Survey, included three domains: patients and family-centered communication, cultural and ethical values, effective care delivery. The Intensity of Interprofessional Collaboration Scale included two subscales: care sharing activities, and interprofessional coordination. In total, 697 LTC staff were given surveys, including personal support workers, support staff (housekeeping, kitchen, recreation, laundry, dietician aids, office staff), and registered staff (licensed nurses, physiotherapists, social workers, pharmacists, physicians). Results: A total of 317 participants completed the survey (126 personal support workers, 109 support staff, 82 registered staff) for a response rate of 45%. Significant differences emerged among occupational groups across all scales and subscales. Specifically, support staff rated their comfort of working with dying patients significantly lower than both nurses and PSWs. Support staff also reported significantly lower ratings of care sharing activities and interprofessional coordination compared to both registered staff and personal support workers. Conclusions: These study findings suggest there are differing educational needs and sense of interprofessional collaboration among LTC staff, specific to discipline group. Both the personal support workers and support staff groups appeared to have higher needs for education; support staff also reported higher needs related to integration on the interdisciplinary team. Efforts to build capacity within support staff re...
Parker, D, Eley, R, Burston, A & Tuckett, A 2017, 'Moral Distress', Australian Nursing and Midwifery Journal, vol. 24, no. 6, pp. 24-24.
Practicing within a moral framework is expected professionally and framed within documents such as the Code of Ethics for Nurses in Australia (Nursing & Midwifery Board of Australia, 2013a) and Code of Professional Conduct for Nurses in Australia (Nursing & Midwifery Board of Australia, 2013b). The challenge is for the profession to embrace our role as moral agents, actively educate staff and provide forums for multi-disciplinary teams to discuss and debate ethical challenges in practice.
Rawlings, D, Miller-Lewis, L, Collien, D, Tieman, J, Parker, D & Sanderson, C 2017, 'Lessons Learned from the Dying2Learn MOOC: Pedagogy, Platforms and Partnerships', Education Sciences, vol. 7, no. 3, pp. 1-10.View/Download from: Publisher's site
(1) Background: Massive Open Online Courses (MOOCs) are becoming more commonplace in the delivery of free online education and a Dying2Learn MOOC was offered by a team at Palliative and Supportive Services, Flinders University, South Australia; (2) Methods: Working with the OpenLearning platform developer, a research study and MOOC evaluation were embedded in the course, and content was delivered in innovative ways without compromising pedagogical approaches; (3) Results: This MOOC provided the facilitators with the opportunity to view education as an intervention, with testing undertaken, including measuring attitudinal change. Research, clinical and community partnerships were developed or reaffirmed and the value of ongoing partnerships with developers in creating platforms and tools that can expand the options for online learning is highlighted. Opportunities for future health professional and consumer education were also explored; (4) Conclusion: MOOCs can provide innovative opportunities to redesign educational approaches, which can be achieved by working with new technologies and with platform developers, while still adhering to pedagogical principles.
Rawlings, D, Tieman, JJ, Sanderson, C, Parker, D & Miller-Lewis, L 2017, 'Never say die: death euphemisms, misunderstandings and their implications for practice', International Journal of Palliative Nursing, vol. 23, no. 7, pp. 112-118.View/Download from: Publisher's site
A Massive Open Online Course (MOOC) on death and dying was conducted to open the dialogue around
death and dying. In one activity, participants were asked to engage with language and to think of alternative words (or
euphemisms) that are used to describe death. Aim: To reflect from a nursing perspective how language enables and sometimes
disguises important messages and conversations. Methods: Four hundred and seventy one participants provided 3053
euphemisms. Findings: Euphemisms were varied, with many providing commentary on their purpose and use. Discussion: As
a society we have become quite creative in the use of euphemisms, but need to be mindful of misunderstandings and
misinterpretations which can cause embarrassment and distress in clinical situations. Conclusion: This paper describes some
of the euphemisms that were provided, examining why they are used and how their use can be easily misconstrued in daily life
and in clinical practice.
Burston, A, Eley, R, Parker, D & Tuckett, A 2016, 'MORAL DISTRESS', Australian nursing & midwifery journal, vol. 24, no. 6, p. 24.
Australia has an ageing nursing workforce with many nurses due to retire (Health Workforce Australia, 2014). Coupled with increasing service demands, the need for workers will outstrip the supply (CEPAR - ARC Centre of Excellence in Population Ageing Research, 2014).
Khalil, H, Peters, M, Godfrey, CM, McInerney, P, Soares, CB & Parker, D 2016, 'An Evidence-Based Approach to Scoping Reviews', WORLDVIEWS ON EVIDENCE-BASED NURSING, vol. 13, no. 2, pp. 118-123.View/Download from: Publisher's site
Parker, D, Clifton, K, Tuckett, A, Walker, H, Reymond, E, Prior, T, McAnelly, K, Jenkin, P, Israel, F, Greeve, K & Glaetzer, K 2016, 'Palliative care case conferences in long-term care: views of family members', INTERNATIONAL JOURNAL OF OLDER PEOPLE NURSING, vol. 11, no. 2, pp. 140-148.View/Download from: Publisher's site
Parker, D, Maresco-Pennisi, D, Clifton, K, Shams, R & Young, J 2016, 'Practice nurse involvement in the management of adults with type 2 diabetes mellitus attending a general practice: results from a systematic review', INTERNATIONAL JOURNAL OF EVIDENCE-BASED HEALTHCARE, vol. 14, no. 2, pp. 41-52.View/Download from: Publisher's site
Petriwskyj, A, Parker, D, O'Dwyer, S, Moyle, W & Nucifora, N 2016, 'Interventions to build resilience in family caregivers of people living with dementia: a comprehensive systematic review', JBI database of systematic reviews and implementation reports, vol. 14, no. 6, pp. 238-273.View/Download from: Publisher's site
BACKGROUND: Recent studies have indicated that family caregivers of people with dementia have higher rates of depression, anxiety and hopelessness, as well as higher levels of burden, stress and distress. Not all caregivers, however, succumb to the negative effects of caring. Caregivers who are able to recover from, resist or adapt to the physical and psychological demands of caring can be considered "resilient".OBJECTIVES: The objective of this review was to examine the existing evidence regarding interventions for building resilience in family caregivers of people living with dementia.INCLUSION CRITERIA TYPES OF PARTICIPANTS: This review considered studies that included family caregivers of people with dementia.TYPES OF INTERVENTION(S)/PHENOMENA OF INTEREST: Studies investigating interventions to build resilience in family caregivers were considered by the review. For qualitative studies, the phenomena of interest were family caregivers' experiences of the interventions including factors affecting implementation and their subjective experience of outcomes.CONTEXT: Studies conducted in any cultural or geographical context and any settings including participants' homes in the community, residential aged care or hospital, medical or allied health practice were considered for inclusion.TYPES OF STUDIES: Quantitative studies incorporating experimental and descriptive study designs and qualitative studies, including, but not limited to, phenomenology, grounded theory, ethnography, action research and feminist research were considered for inclusion.OUTCOMES: Quantitative studies were included that contained either objective or subjective outcome measures (or a combination of both). In cases in which proxy measures of resilience were used, only those papers that explicitly related the aims of the intervention and the measurement of outcomes to resilience itself were considered for inclusion. Proxies could include, but were not limited to, self-efficacy, locus of contro...
Petriwskyj, A, Parker, D, Wilson, CB & Gibson, A 2016, 'Evaluation of Subscription-based Culture Change Models in Care Settings: Findings From a Systematic Review', GERONTOLOGIST, vol. 56, no. 4, pp. E46-E62.View/Download from: Publisher's site
Petriwskyj, A, Parker, D, Wilson, CB & Gibson, A 2016, 'What Health and Aged Care Culture Change Models Mean for Residents and Their Families: A Systematic Review', GERONTOLOGIST, vol. 56, no. 2, pp. E12-E20.View/Download from: Publisher's site
Reymond, L, Cooper, K, Parker, D & Chapman, M 2016, 'End-of-life care: Proactive clinical managment of older Australians in the community', Australian Family Physician, vol. 45, no. 1-2, pp. 76-78.
Due to the changing demographics of ageing and death in Australia, general practitioners (GPs) are caring for greater numbers of people with advanced chronic conditions that will soon lead to death. GPs play a pivotal role in proactively preparing these people for end of life.
This article introduces GPs to a framework of care, based on a palliative care approach, which supports proactive management of end-of-life care for older Australians living in the community.
Embedding the above framework into routine practice can help GPs deliver care, aligned with patients' preferences, at the right time and in the right place. Experience has shown that implementing proactive management of end-of-life care can increase satisfaction with GP care and help GPs meet the clinical, legal and ethical challenges associated with caring for older patients with advanced progressive conditions.
Peters, MDJ, Godfrey, CM, Khalil, H, McInerney, P, Parker, D & Soares, CB 2015, 'Guidance for conducting systematic scoping reviews', INTERNATIONAL JOURNAL OF EVIDENCE-BASED HEALTHCARE, vol. 13, no. 3, pp. 141-146.View/Download from: Publisher's site
Petriwskyj, A, Parker, D, O'Dwyer, S, Moyle, W & Nucifora, N 2015, 'Interventions to build resilience in family carers of people living with dementia: a systematic review protocol.', JBI Database of Systematic Reviews and Implementation Reports, vol. 13, no. 7, pp. 44-61.View/Download from: Publisher's site
Scott, TL, Mittelman, MS, Beattie, E, Parker, D & Neville, C 2015, 'Translating Training in the NYU Caregiver Intervention in Australia: Maintaining Fidelity and Meeting Graduate Standards in an Online Continuing Professional Education Setting', EDUCATIONAL GERONTOLOGY, vol. 41, no. 10, pp. 710-722.View/Download from: Publisher's site
Tuckett, A, Parker, D, Clifton, K, Walker, H, Reymond, E, Prior, T, Jenkin, P, Israel, F, Greeve, K & Glaetzer, K 2015, 'What general practitioners said about the palliative care case conference in residential aged care: An Australian perspective. Part 2', PROGRESS IN PALLIATIVE CARE, vol. 23, no. 1, pp. 9-17.View/Download from: Publisher's site
Tuckett, AG, Hodgkinson, B, Rouillon, L, Balil-Lozoya, T & Parker, D 2015, 'What carers and family said about music therapy on behaviours of older people with dementia in residential aged care', INTERNATIONAL JOURNAL OF OLDER PEOPLE NURSING, vol. 10, no. 2, pp. 146-157.View/Download from: Publisher's site
Hudson, PL, Girgis, A, Mitchell, GK, Philip, J, Parker, D, Currow, D, Liew, D, Thomas, K, Le, B, Moran, J & Brand, C 2015, 'Benefits and resource implications of family meetings for hospitalized palliative care patients: research protocol', BMC PALLIATIVE CARE, vol. 14.View/Download from: Publisher's site
Fox, B, Hodgkinson, B & Parker, D 2014, 'The effects of physical exercise on functional performance, quality of life, cognitive impairment and physical activity levels for older adults aged 65 years and older with a diagnosis of dementia: a systematic review', JBI Database of Systematic Reviews and Implementation Reports, vol. 12, no. 9, pp. 158-276.View/Download from: Publisher's site
Froggatt, K & Parker, D 2014, 'Guest editorial: Development of palliative care in long term-care facilities: A new evidence base', International Journal of Older People Nursing, vol. 9, no. 2, pp. 91-92.View/Download from: Publisher's site
Parker, D 2014, 'Moving from research generation to knowledge translation in end-of-life care in long term care', PALLIATIVE MEDICINE, vol. 28, no. 9, pp. 1079-1080.View/Download from: Publisher's site
Parker, D & Clifton, K 2014, 'Guest commentary: Residential aged care: The de facto hospice for New Zealand's older people', AUSTRALASIAN JOURNAL ON AGEING, vol. 33, no. 2, pp. 72-73.View/Download from: Publisher's site
Petriwskyj, A, Gibson, A, Parker, D, Banks, S, Andrews, S & Robinson, A 2014, 'A qualitative metasynthesis: family involvement in decision making for people with dementia in residential aged care', INTERNATIONAL JOURNAL OF EVIDENCE-BASED HEALTHCARE, vol. 12, no. 2, pp. 87-104.View/Download from: Publisher's site
Petriwskyj, A, Gibson, A, Parker, D, Banks, S, Andrews, S & Robinson, A 2014, 'Family involvement in decision making for people with dementia in residential aged care: a systematic review of quantitative literature', INTERNATIONAL JOURNAL OF EVIDENCE-BASED HEALTHCARE, vol. 12, no. 2, pp. 64-86.View/Download from: Publisher's site
Tuckett, A, Parker, D, Clifton, K, Glaetzer, K, Greeve, K, Israel, F, Jenkin, P, Prior, T, Reymond, E & Walker, H 2014, 'What general practitioners said about the palliative care case conference in residential aged care: An Australian perspective. Part 1', PROGRESS IN PALLIATIVE CARE, vol. 22, no. 2, pp. 61-68.View/Download from: Publisher's site
Petriwskyj, A, Parker, D, Robinson, A, Gibson, A, Andrews, S & Banks, S 2013, 'Family involvement in decision making for people with dementia in residential aged care: A systematic review of quantitative and qualitative evidence', JBI Database of Systematic Reviews and Implementation Reports, vol. 11, no. 7, pp. 131-282.View/Download from: Publisher's site
Background The involvement of people in decisions about their care is recognized as both good practice and important in ensuring optimal outcomes. However, despite a considerable history of research attention to aspects of this issue, in practice family involvement in decision making can be challenging for care staff and families alike. Objectives The qualitative and quantitative objective of this review was to scope the extant knowledge about family involvement in decision making for people with dementia living in residential aged care. Inclusion criteria Types of participants This review considered studies that included people with dementia who were living in residential aged care, their families and care staff. Types of intervention(s)/phenomena of interest This review considered studies that investigated involvement of family members in decision making for people with dementia in a residential aged care setting. Types of studies The quantitative component of the review considered both experimental and descriptive study designs. The qualitative component considered studies that focused on qualitative data including designs such as phenomenology, grounded theory, ethnography, action research and feminist research. Types of outcomes This review considered studies that investigated or discussed who the decision makers were in care for people with dementia and how decisions were made, what processes assisted families in decision making and what were the barriers or facilitators to collaborative decision making by families, as well as the impact of decision making processes on family members and the impact of collaborative decision making with family members on the person with dementia. Search strategy A comprehensive search of research studies that were published in English was conducted in 15 electronic databases. The search strategy was limited to papers published in or after 1990. Methodological quality Quantitative and qualitative studies selected for retrieva...
Reitinger, E, Froggatt, K, Brazil, K, Heimerl, K, Hockley, J, Kunz, R, Morbey, H, Parker, D & Husebo, BS 2013, 'Palliative care in long-term care settings for older people: Findings from an EAPC Taskforce', European Journal of Palliative Care, vol. 20, no. 5, pp. 251-253.
Parker, D, Clifton, K, Shams, R & Young, J 2012, 'The effectiveness of nurse-led care in general practice on clinical outcomes in adults with type 2 diabetes', JBI Database of Systematic Reviews and Implementation Reports, vol. 10, no. 38, pp. 2514-2558.View/Download from: Publisher's site
© the authors 2012. Background: In Australia, diabetes was identified as a national health priority area in 1996; nevertheless the prevalence of type 2 diabetes has increased dramatically since then. Nurses have been working within Australian general practices for several decades but only in recent years has the role of the practice nurse in primary health care increased. Objectives: This review aims to identify the effectiveness of nurse-led care in general practice as compared to general practitioner care on clinical outcomes in adults with type 2 diabetes.
Petriwskyj, A, Robinson, A, Parker, D, Banks, S & Andrews, S 2012, 'Family involvement in decision making for people with dementia in residential aged care: A systematic review of quantitative and qualitative evidence [Protocol]', JBI Database of Systematic Reviews and Implementation Reports, vol. 10, no. 42, pp. 1-17.View/Download from: Publisher's site
© 2012, Joanna Briggs Institute. All rights Reserved. Review question/objective The qualitative and quantitative objective of this review is to scope the extant knowledge about family involvement in decision making for people with dementia living in residential aged care. More specifically, the review question/s are •Who are the decision makers for people with dementia living in residential care? •What is the experience of decision making for family members in the residential care setting? •What are the barriers or facilitators to decision making by families? •What is the impact of decision making processes on family members? •What is the impact of collaborative decision making with family on the person with dementia? •What processes or strategies do family decision-makers use?
Strand, H & Parker, D 2012, 'Effects of multidisciplinary models of care for adult pre-dialysis patients with chronic kidney disease: a systematic review', INTERNATIONAL JOURNAL OF EVIDENCE-BASED HEALTHCARE, vol. 10, no. 1, pp. 53-59.View/Download from: Publisher's site
Froggatt, K, Hockley, J, Parker, D & Brazil, K 2011, 'A system lifeworld perspective on dying in long term care settings for older people: contested states in contested places.', Health and Place, vol. 17, no. 1, pp. 263-268.View/Download from: Publisher's site
In many Western countries, older people live and die in long-term institutional care settings. Habermas's concepts of lifeworld, system and communicative action are drawn upon to illuminate the experience of living and dying in this particular place. It is proposed that dying older adults, their family and care staff occupy different contested states and long term care settings are contested places, located in a wider system. This wider system, mediated through care homes, can colonise the life world experiences of dying individuals. The development of communicative space bridges the lifeworld and system and offers a way for the lifeworld of dying individuals, and those around them to be reintegrated into, and influence the wider system.
Parker, D & Hodgkinson, B 2011, 'A comparison of palliative care outcome measures used to assess the quality of palliative care provided in long-term care facilities: a systematic review.', Palliat Med, vol. 25, no. 1, pp. 5-20.View/Download from: Publisher's site
Provision of palliative care in long-term care (LTC) facilities is important, but limited research has been undertaken to investigate the most appropriate outcome measure for use in this setting. In this systematic review we aimed to measure the psychometric properties (reliability/validity) and feasibility of palliative outcome measures used to assess the quality of palliative care provided in LTC. For identification of outcome measures we undertook systematic searches of electronic databases from 1 January 2000 to 12 September 2008. Included studies were assessed by two independent reviewers for methodological quality prior to inclusion in the review using an appraisal checklist developed for the review to evaluate validity, reliability and feasibility. Ten articles were included in the final review and these provided specific information on the psychometric properties of 10 outcome measures. Four of these measures reported data specifically for residents in LTC facilities, while the remaining six measures reported a sub-set of data for residents in LTC facilities. The Family Perceptions of Care Scale is considered by the authors as the most suitable outcome measure for use in LTC facilities. Of the remaining nine measures, a further two were also considered suitable for measuring the quality of palliative care in residential aged care facilities. These are the Quality of Dying in Long-term Care scale and the Toolkit Interview.
Tuckett, A, Hegney, D, Parker, D, Eley, RM & Dickie, R 2011, 'The top eight issues Queensland Australia's aged-care nurses and assistants-in-nursing worried about outside their workplace: a qualitative snapshot.', Int J Nurs Pract, vol. 17, no. 5, pp. 444-454.View/Download from: Publisher's site
The attainment of a work-life balance is an important issue for recruitment, retention and workforce planning. This paper aims to report on the free text data provided by the aged-care sector nurses around perceptions of important work-life issues. Data were written responses of aged-care nurses to the open-ended request at the end of a survey, which asked them to list up to five political/social/environmental issues concerning them outside of their work. For aged-care nurses, when asked to list political/social/environmental issues they were concerned about outside of work in late 2007, there emerged considered issues around work and life. Among the top eight themes there is an intriguing balance between the themes work, industrial relations, aged care/elder care and health-care services compared with the themes environment, water, societal values and housing. Qualitative insights into the political/social/environmental issues aged-care nurses are concerned about outside of your work suggest their desire for a labour/life or work/life harmony. Aged-care nurses place an equal importance on the nature of labour and the basics of life. The findings provide information for aged-care sector managers and workforce planners on areas in need of consideration to recruit and retain a workforce within aged care.
Eley, R, Parker, D, Tuckett, A & Hegney, D 2010, 'Career breaks and intentions for retirement by Queensland's nurses-A sign of the times?', COLLEGIAN, vol. 17, no. 1, pp. 38-42.View/Download from: Publisher's site
Hegney, D, Tuckett, A, Parker, D & Eley, RM 2010, 'Workplace violence: Differences in perceptions of nursing work between those exposed and those not exposed: A cross-sector analysis', INTERNATIONAL JOURNAL OF NURSING PRACTICE, vol. 16, no. 2, pp. 188-202.View/Download from: Publisher's site
Hegney, D, Tuckett, A, Parker, D & Robert, E 2010, 'Access to and support for continuing professional education amongst Queensland nurses: 2004 and 2007', NURSE EDUCATION TODAY, vol. 30, no. 2, pp. 142-149.View/Download from: Publisher's site
This aim of this paper is to discuss the latest evidence in regard to palliative care in residential aged care with particular emphasis on three areas: (i) initiatives in providing palliative care; (ii) dementiaspecific initiatives in providing palliative care; and (iii) advance care planning. © 2010 Maney Publishing.
Parker, D, Tuckett, A, Eley, R & Hegney, D 2010, 'Construct validity and reliability of the Practice Environment Scale of the Nursing Work Index for Queensland nurses', INTERNATIONAL JOURNAL OF NURSING PRACTICE, vol. 16, no. 4, pp. 352-358.View/Download from: Publisher's site
Henwood, T, Eley, R, Parker, D, Tuckett, A & Hegney, D 2009, 'Regional differences among employed nurses: A Queensland study', AUSTRALIAN JOURNAL OF RURAL HEALTH, vol. 17, no. 4, pp. 201-207.View/Download from: Publisher's site
Parker, D, Mills, S & Abbey, J 2008, 'Effectiveness of interventions that assist caregivers to support people with dementia living in the community: A systematic review', International Journal of Evidence-Based Healthcare, vol. 6, no. 2, pp. 137-172.View/Download from: Publisher's site
© 2008 The Authors Journal Compilation. © Blackwell Publishing Asia Pty Ltd. Objectives: The objective of this review was to assess the effectiveness of interventions that assist caregivers to provide support for people living with dementia in the community. Inclusion criteria: Types of participants: Adult caregivers who provide support for people with dementia living in the community (non-institutional care). Types of interventions: Interventions designed to support caregivers in their role such as skills training, education to assist in caring for a person living with dementia and support groups/programs. Interventions of formal approaches to care designed to support caregivers in their role, care planning, case management and specially designated members of the healthcare team - for example dementia nurse specialist or volunteers trained in caring for someone with dementia. Types of studies: This review considered any meta-analyses, systematic reviews, randomised control trials, quasi-experimental studies, cohort studies, case control studies and observational studies without control groups that addressed the effectiveness of interventions that assist caregivers to provide support for people living with dementia in the community. Search strategy: The search sought to identify published studies from 2000 to 2005 through the use of electronic databases. Only studies in English were considered for inclusion. The initial search was conducted of the databases, CINAHL, MEDLINE and PsychINFO using search strategies adapted from the Cochrane Dementia and Cognitive Improvement Group. A second more extensive search was then conducted using the appropriate Medical Subject Headings (MeSH) and keywords for other available databases. Finally, hand searching of reference lists of articles retrieved and of core dementia, geriatric and psycho geriatric journals was undertaken. Assessment of quality: Methodological quality of each of the articles was assessed by two independent...
Throughout my nursing career from new graduate to experienced clinician, nurse educator, and finally nurse leader, my passion for the profession has rarely waned. It has been one of my long-standing beliefs that nurses are privileged to be entrusted with the care of individuals who are often at their most vulnerable. However, that privilege comes with enormous responsibility. We must be clinically competent, technologically savvy, emotionally connected, and physically able. © 2006 Mosby, Inc. All rights reserved.
Brown, M, Grbich, C, Maddocks, I, Parker, D, Roe, P & Willis, E 2005, 'Documenting end of life decisions in residential aged care facilities in South Australia', AUSTRALIAN AND NEW ZEALAND JOURNAL OF PUBLIC HEALTH, vol. 29, no. 1, pp. 85-90.View/Download from: Publisher's site
Grbich, C, Maddocks, I, Parker, D, Brown, M, Willis, E, Hofmeyer, A & Piller, N 2005, 'Palliative care in aged care facilities for residents with a non-cancer disease: results of a survey of aged care facilities in South Australia', AUSTRALASIAN JOURNAL ON AGEING, vol. 24, no. 2, pp. 108-113.View/Download from: Publisher's site
Grbich, C, Maddocks, I, Parker, D, Brown, M, Willis, E, Piller, N & Hofmeyer, A 2005, 'Identification of patients with noncancer diseases for palliative care services', Palliative and Supportive Care, vol. 3, no. 1, pp. 5-14.View/Download from: Publisher's site
Objective: To identify criteria for measuring the eligibility of patients with end-stage noncancer diseases for palliative care services in Australian residential aged care facilities. Methods: No validated set if guidelines were available so five instruments were used: an adaptation of the American National Hospice Association Guidelines; a recent adaptation of the Karnofsky Performance Scale; the Modified Barthel Index; the Abbey Pain Score for assessment of people who are nonverbal and a Verbal Descriptor Scale, also for pain measurement. In addition, nutritional status and the presence of other problematic symptoms and their severity were also sought. Results: The adapted American National Hospice Association Guidelines provided an initial indicative framework and the other instruments were useful in providing confirmatory data for service eligibility and delivery. © 2005, Cambridge University Press. All rights reserved.
Parker, D, Grbich, C, Brown, M, Maddocks, I, Willis, E & Roe, P 2005, 'A palliative approach or specialist palliative care? What happens in aged care facilities for residents with a noncancer diagnosis?', JOURNAL OF PALLIATIVE CARE, vol. 21, no. 2, pp. 80-87.View/Download from: Publisher's site
Abbey, J, Piller, N, De Bellis, A, Esterman, A, Parker, D, Giles, L & Lowcay, B 2004, 'The Abbey pain scale: a 1-minute numerical indicator for people with end-stage dementia.', International journal of palliative nursing, vol. 10, no. 1, pp. 6-13.View/Download from: Publisher's site
The need for a specialized clinical regimen for patients with dementia who require palliative care has only recently been recognized. Structured approaches to palliative care are not well developed. The recognition and treatment of pain is an important part of this management risk. However, pain is consistently underdiagnosed and undertreated in this population. A factor contributing to this has been a lack of appropriate tools to help recognize and document pain. This study sought to develop and validate an easy-to-use pain scale for use in residential aged care homes. The tool was developed with residents with end- or late-stage dementia who were unable to articulate their needs, identified by the registered nurses who knew them. Results showed that following pain-relief intervention the average pain score recorded using the scale fell by more than half. A paired Student's t-test showed the reduction to be highly significant (P<0.001). Validity and internal reliability, assessed by calculating Gamma and Cronbach's alpha, were found to be satisfactory. Qualitative evidence gathered from users of the scale indicated that it was considered a useful clinical device that could be completed within one minute. Further analysis of the use of the scale in clinical settings, testing of inter-rater reliability and examination of the limitations found in this study will commence early in 2004.
Grbich, C, Parker, D & Maddocks, I 2001, 'The emotions and coping strategies of caregivers of family members with a terminal cancer', JOURNAL OF PALLIATIVE CARE, vol. 17, no. 1, pp. 30-36.View/Download from: Publisher's site
Parker, D, Grbich, C & Maddocks, I 2001, 'Financial issues in caring for someone with terminal cancer at home', Australian Journal of Primary Health, vol. 7, no. 2, pp. 37-42.View/Download from: Publisher's site
For the majority of patients with terminal cancer their preferred place of death is at home. Many factors determine this choice, in particular the availability of a carer, the patient's physical condition and adequate services. A factor often underestimated is the financial impact of caring for someone at home. This paper examines the financial concerns of carers of terminally ill cancer patients and whether current Australian health care policy is able to address thes concerns. Two main categories of cost were identified, those related to the patients physical care needs and those impacted on carer lifestyle. The current government allowances to assist carers in these costs are limited by carers either being unaware that the benefits existed or by the strict qualifying criteria that restricts access to those who care for the terminally ill.
Cadd, A, Keatinge, D, Henssen, M, O'Brien, L, Parker, D, Rohr, Y, Schneider, J & Thompson, J 2000, 'Assessment and documentation of bowel care management in palliative care: incorporating patient preferences into the care regimen', JOURNAL OF CLINICAL NURSING, vol. 9, no. 2, pp. 228-235.View/Download from: Publisher's site
Parker, D, Maddocks, I & Stern, LM 1999, 'The role of palliative care in advanced muscular dystrophy and spinal muscular atrophy', JOURNAL OF PAEDIATRICS AND CHILD HEALTH, vol. 35, no. 3, pp. 245-250.View/Download from: Publisher's site
Maddocks, I, Somogyi, A, Abbott, F, Hayball, P & Parker, D 1996, 'Attenuation of morphine-induced delirium in palliative care by substitution with infusion of oxycodone', JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, vol. 12, no. 3, pp. 182-189.View/Download from: Publisher's site
Miller, RS, Peterson, GM, Abbott, F, Maddocks, I, Parker, D & McLean, S 1995, 'Plasma concentrations of fentanyl with subcutaneous infusion in palliative care patients', BRITISH JOURNAL OF CLINICAL PHARMACOLOGY, vol. 40, no. 6, pp. 553-556.
Parker, D 2012, 'Ageing, dementia and palliative care' in O'Connor, M & Aranda, S (eds), Palliative Care Nursing, Ausmed, Australia, pp. 309-329.
Parker, D 2011, 'The development and implementation of evidence-based palliative care guidelines for residential care: Lessons for other countries' in Merryn, G & Christine, I (eds), Living with Ageing and Dying: Palliative and End of Life Care for Older People, Oxford University Press, UK, pp. 226-236.
Palliative and End of Life Care for Older People Merryn Gott, Christine Ingleton ...
care of older people is that, in the past and in other societies less modern than
our own, communities have cared for their elderly better than we currently do.
Parker, D & Froggatt, K 2011, 'Palliative care for older people' in Tolson, D, Booth, J & Schofield, I (eds), Evidence Informed Nursing with Older People, Wiley-Blackwell, United Kindgom, pp. 84-100.
Froggatt, K & Parker, D 2009, 'Care homes and long-term care for people with dementia' in Supportive Care for the Person with Dementia, Oxford University Press, UK, pp. 181-188.View/Download from: Publisher's site
A significant proportion of people living with dementia will live and stay in long-term care settings. Consequently, care homes have an important role to play in the provision of supportive care for people with dementia. This chapter initially describes the care home context, as this shapes the experiences of living and dying for people with dementia residing in care homes. It draws on two recent studies, both considering the provision of palliative care for people who are living and dying in care homes: one from the UK (Froggatt) and one from Australia (Parker). From this empirical research it identifies two key challenges that face care homes as they support people with dementia living in such settings: how do we, on the one hand, create a culture of openness to people's experiences of living and dying alongside, on the other hand, maintaining people's identities? These both require attention in the care home setting if person-centred supportive care is to be provided throughout a person's life until their death.
Xu, X & Parker, D 2018, 'Long-term breakfast cereals consumption and heart diseases for older Australians.', Australian Association of Gerontology, Melbourne.
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.
Hudson, P, Thomas, K, Girgis, A, Mitchell, G, Philip, J, Parker, D, Currow, D, Liew, D, Le, B, Moran, J & Brand, C 2018, 'Benefits of Family Meetings for Hospitalized Palliative Care Patients and Their Family Caregivers', JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, 22nd International Congress on Palliative Care, ELSEVIER SCIENCE INC, Montreal, CANADA, pp. E56-E57.View/Download from: Publisher's site
Hickman, L, Parker, D, Ferguson, C, Allida, S, Davidson, P & Agar, M 2018, 'A Systematic Review of Successful Elements of Interventions for Heart Failure Patients With Mild Cognitive Impairment', Heart, Lung and Circulation, Elsevier BV, pp. S382-S382.View/Download from: Publisher's site
Durepos, PM, Kaasalainen, S, Tamara, S, Ploeg, J, Parker, D, Brazil, K & Papaioannou, A 2017, 'ASSESSING FAMILY CARE CONFERENCES IN LONG-TERM CARE: LESSONS LEARNED FROM CONTENT ANALYSIS', Innovation in Aging, Oxford University Press, pp. 254-255.View/Download from: Publisher's site
End-of-life (EOL) communication in long-term care (LTC) is often inadequate and delayed, leaving residents dying with unknown preferences or goals of care. Poor communication with staff contributes to families feeling unprepared, distressed and unsatisfied negatively effecting bereavement. Family Care Conferences (FCC) aim to increase structured, systematic communication around goals and plans for EOL.
FCCs were implemented as part of the 'Strengthening a Palliative Approach to Care' (SPA-LTC) project in four LTC sites in Ontario, Canada. The purpose of this sub-study is to evaluate: a) content, b) processes, and c) interdisciplinary engagement using mixed methods. Twenty-four FCCs were held for residents with a Palliative Performance Scale of 40% (nearing death) considered appropriate by staff. Data was collected from FCC forms (i.e., Family Questionnaires, Conference Summaries) and electronic charts. Through directed-analysis, data was analyzed using the Canadian Hospice Palliative Care Association's 'Square of Care' model which includes eight domains of care: Disease Management, Physical, Psychological, Social, Practical, Spiritual, EOL, and Loss/Bereavement.
Findings showed on average each FCC documented 66% of domains with physical and EOL care domains being used the most, and content about loss/bereavement documented the least. Use of FCC hard copy forms had benefits over standard electronic charts including: higher proportion of goals, timely completion, category for end-of-life care and accessibility. FCCs were attended by an average of three disciplines prompting holistic content although Personal Support Workers (PSW) and physicians attended minimally. Implications to optimize FCCs include tailoring use of FCCs forms, prompting bereavement discussion, furthering engagement of PSWs and physicians.
Neville, C, Mittelman, MS, Beattie, E, Scott, T, Hobday, J & Parker, D 2013, 'SUPPORTING CARERS OF PEOPLE WITH DEMENTIA: AN INNOVATIVE LEARNING PLATFORM FOR HEALTH WORKERS', GERONTOLOGIST, OXFORD UNIV PRESS INC, pp. 72-72.
Parker, D 2012, 'Psychometric Properties of the Family Perceptions of Care Scale in Australian Long-Term Care Settings', JOURNAL OF PALLIATIVE CARE, CENTRE RECHERCHE INSTITUT UNIV GERIATRIE MONTREAL, pp. 213-213.
Parker, D, van der Steen, J & Clifton, K 2012, 'Bereaved Carer Satisfaction with Palliative Dementia Care: Comparisons between Long-Term Care (LTC) in Australia and the Netherlands', JOURNAL OF PALLIATIVE CARE, CENTRE RECHERCHE INSTITUT UNIV GERIATRIE MONTREAL, pp. 228-228.
Brazil, K, Froggatt, K, Parker, D & Teno, J 2006, 'Palliative care for older people in long-term care settings: an international comparison of challenges and solutions', JOURNAL OF PALLIATIVE CARE, CENTER BIOETHICS CLIN RES INST MONTREAL, pp. 197-197.
Grbich, C, Maddocks, I, Parker, D, Piller, N, Brown, M, Willis, E & Connellan, P 2003, 'What do we Mean by Palliative Care in Residential Aged Care Facilities', AUSTRALASIAN JOURNAL ON AGEING, WILEY-BLACKWELL, pp. 19-20.
Grbich, C, Maddox, I & Parker, D 2000, 'The emotions and coping strategies of caregivers of family members with a terminal cancer.', PSYCHO-ONCOLOGY, JOHN WILEY & SONS LTD, pp. S60-S60.