Palliative and Supportive Services

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https://hdl.handle.net/2328/1598

The Department of Palliative and Supportive Services offers educational programs in Palliative Care, Applied Gerontology, Palliative Care in Aged Care and Paediatric Palliative Care, geared towards multidisciplinary health care professionals.

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Now showing 1 - 20 of 47
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    Advance Care Planning for Adults With CKD: A Systematic Integrative Review
    (Elsevier, 2014-05) Luckett, T ; Sellars, M ; Tieman, Jennifer ; Pollock, CA ; Silvester, W ; Butow, Phyllis N ; Detering, KM ; Brennan, Frank ; Clayton, Josephine M
    Background Recent clinical practice guidelines have highlighted the importance of advance care planning (ACP) for improving end-of-life care for people with chronic kidney disease (CKD). Study Design We conducted a systematic integrative review of the literature to inform future ACP practice and research in CKD, searching electronic databases in April 2013. Synthesis used narrative methods. Setting & Population We focused on adults with a primary diagnosis of CKD in any setting. Selection Criteria for Studies We included studies of any design, quantitative or qualitative.. Interventions ACP was defined as any formal means taken to ensure health professionals and family members are aware of patients’ wishes for care in the event they become too unwell to speak for themselves. Outcomes Measures of all kinds were considered to be of interest. Results Fifty-five articles met criteria reporting on 51 discrete samples. All patient samples included people with Stage 5 CKD; two also included patients with Stage 4. Seven interventions were tested; all were narrowly focused and none was evaluated by comparing wishes for end-of-life care with care received. One intervention demonstrated effects on patient/family outcomes in the form of improved wellbeing and anxiety following sessions with a peer mentor. Insights from qualitative studies that have not been emphasised in interventions include the importance of instilling patient confidence that their advance directives will be enacted and discussing decisions about (dis)continuing dialysis separately from ‘aggressive’ life-sustaining treatments (e.g. ventilation). Limitations Whilst quantitative and qualitative findings were integrated according to best practice, methods for this are in their infancy. Conclusions Research on ACP in patients with CKD is limited, especially regarding intervention studies. Interventions in CKD should attend to barriers and facilitators at the levels of patient, caregiver, health professional and system. Intervention studies should measure impact on compliance with patient wishes for end-of-life care. Index words Chronic kidney disease, Renal failure, Advance care planning, Advance directives, Decision-making
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    Allied Health Clinicians' Understanding of Palliative Care as It Relates to Patients, Caregivers, and Health Clinicians: A Cross-Sectional Survey
    (Association of Schools of Allied Health Professionals, 2019-06-01) Morgan, Deidre D ; Rawlings, Deb ; Button, Elizabeth Dionicia ; Tieman, Jennifer
    PURPOSE: The scope of hospice or palliative care has expanded since its inception, which has significant ramifications for the AH workforce. This study sought to elicit allied health (AH) clinicians' understanding and views about palliative care and its relevance to their clinical practice and to identify their educational needs. Results from analysis of free text survey responses to a single openended question from a larger survey are presented. METHODS: An online survey was distributed to AH clinicians via email lists for the CareSearch Allied Health Hub, Allied Health Professions Australia, and other groups. Descriptive statistics and content analysis of free text responses were used to analyse the data. RESULTS: A total of 217 AH clinicians responded to an email survey and 187 useable responses were analysed. Four themes were identified: 1) palliative care employs a client-centred model of care, 2) acknowledgement of living whilst dying, 3) interdisciplinary palliative care interventions provide active care in a range of domains, and 4) characteristics of palliative care teams and settings. CONCLUSION: AH clinicians plan an active role in physical, social, and psycho-spiritual care of palliative care patients and caregivers. Burgeoning numbers of palliative care patients in nonspecialist palliative care settings require AH clinicians to develop skills and competencies to work with people who have advanced disease.
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    The Australia-modified Karnofsky Performance Status (AKPS) scale: a revised scale for contemporary palliative care clinical practice [ISRCTN81117481]
    ( 2005) Woods, David A ; Abernethy, Amy Pickar ; Shelby-James, Tania Maree ; Fazekas, Belinda Susan ; Currow, David Christopher
    Background : The Karnofsky Performance Status (KPS) is a gold standard scale. The Thorne-modified KPS (TKPS) focuses on community-based care and has been shown to be more relevant to palliative care settings than the original KPS. The Australia-modified KPS (AKPS) blends KPS and TKPS to accommodate any setting of care. Methods : Performance status was measured using all three scales for palliative care patients enrolled in a randomized controlled trial in South Australia. Care occurred in a range of settings. Survival was defined from enrollment to death. Results : Ratings were collected at 1600 timepoints for 306 participants. The median score on all scales was 60. KPS and AKPS agreed in 87% of ratings; 79% of disagreements occurred within 1 level on the 11-level scales. KPS and TKPS agreed in 76% of ratings; 85% of disagreements occurred within one level. AKPS and TKPS agreed in 85% of ratings; 87% of disagreements were within one level. Strongest agreement occurred at the highest levels (70–90), with greatest disagreement at lower levels (≤40). Kappa coefficients for agreement were KPS-TKPS 0.71, KPS-AKPS 0.84, and AKPS-TKPS 0.82 (all p < 0.001). Spearman correlations with survival were KPS 0.26, TKPS 0.27 and AKPS 0.26 (all p < 0.001). AKPS was most predictive of survival at the lower range of the scale. All had longitudinal test-retest validity. Face validity was greatest for the AKPS. Conclusion : The AKPS is a useful modification of the KPS that is more appropriate for clinical settings that include multiple venues of care such as palliative care.
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    Bereavement help-seeking following an 'expected' death: a cross-sectional randomised face-to-face population survey
    ( 2008) Plummer, John Lewis ; Currow, David Christopher ; Allen, Katrina ; Aoun, Samar M ; Hegarty, Margaret Mary ; Abernethy, Amy Pickar
    Background : This study examines the prevalence and nature of bereavement help-seeking among the population who experienced an "expected" death in the five years before their survey response. Such whole population data are not limited by identification through previous access to specific services nor practitioners. Methods : In a randomised, cross-sectional, state-wide population-based survey, 6034 people over two years completed face-to-face interviews in South Australia by trained interviewers using piloted questions (74.2% participation rate). Respondent demographics, type of grief help sought, and circumstantial characteristics were collected. Uni- and multi-variate logistic regression models were created. Results : One in three people (1965/6034) had experienced an 'expected' death of someone close to them in the last five years. Thirteen per cent sought help for their grief from one or more: friend/family members (10.7%); grief counselors (2.2%); spiritual advisers (1.9%); nurses/doctors (1.5%). Twenty five respondents (1.3%) had not sought, but would have valued help with their grief. In multi-variate regression modeling, those who sought professional help (3.4% of the bereaved) had provided more intense care (OR 5.39; CI 1.94 to14.98; p < 0.001), identified that they were less able to 'move on' with their lives (OR 7.08; CI 2.49 to 20.13; p = 0.001) and were more likely not to be in full- or part-time work (OR 3.75; CI 2.31 – 11.82; p = 0.024; Nagelkerke's R2 = 0.33). Conclusion : These data provide a whole-of-population baseline of bereavement help-seeking. The uniquely identified group who wished they had sought help is one where potentially significant health gains could be made as we seek to understand better any improved health outcomes as a result of involving bereavement services.
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    Building an Architectural Component Model for a Telehealth Service
    (Scientific Research Publishing, 2015-09-16) Taylor, Alan ; Morris, Greg ; Tieman, Jennifer ; Currow, David Christopher ; Kidd, Michael ; Carati, Colin
    Models of services, processes and technology are useful tools for conceptualizing complex systems such as healthcare. The application of a component architecture helps illustrate the processes and technologies that are important to the operation of a health service and conceptualize the relationships between each component. Telehealth services are relatively recent and have characteristics that do not fit neatly into established models of health services. This paper analyzes the components used to build a telehealth in the home service in South Australia and the design choices that were taken. The service used commodity-based devices and systems to deliver simple to use, low-cost in the home care. Building on this analysis, the components required in an architectural component model of a telehealth service are identified enabling a provisional architecture for telehealth services to be derived from an existing internationally recognized architectural model for eHealth systems. Situated within the broad family of eHealth architectures, a Telehealth Architectural Model of telehealth processes, software, devices, common systems and ICT infrastructure is proposed that represents the components required to support telehealth and allows for customization of services according to clinical models of care.
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    Can Video Conferencing Be as Easy as Telephoning?-A Home Healthcare Case Study
    (Scientific Research Publishing, 2016-01-13) Taylor, Alan ; Morris, Greg ; Tieman, Jennifer ; Currow, David Christopher ; Kidd, Michael ; Carati, Colin
    In comparison with almost universal adoption of telephony and mobile technologies in modern day healthcare, video conferencing has yet to become a ubiquitous clinical tool. Currently telehealth services are faced with a bewildering range of video conferencing software and hardware choices. This paper provides a case study in the selection of video conferencing services by the Flinders University Telehealth in the Home trial (FTH Trial) to support healthcare in the home. Using pragmatic methods, video conferencing solutions available on the market were assessed for usability, reliability, cost, compatibility, interoperability, performance and privacy considerations. The process of elimination through which the eventual solution was chosen, the selection criteria used for each requirement and the corresponding results are described. The resulting product set, although functional, had restricted ability to directly connect with systems used by healthcare providers elsewhere in the system. This outcome illustrates the impact on one small telehealth provider of the broader struggles between competing video conferencing vendors. At stake is the ability to communicate between healthcare organizations and provide public access to healthcare. Comparison of the current state of the video conferencing market place with the evolution of the telephony system reveals that video conferencing still has a long way to go before it can be considered as easy to use as the telephone. Health organizations that are concerned to improve access and quality of care should seek to influence greater standardization and interoperability though cooperation with one another, the private sector, international organizations and by encouraging governments to play a more active role in this sphere.
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    Caregivers for people with end-stage lung disease: characteristics and unmet needs in the whole population
    ( 2008) Currow, David Christopher ; Burns, Catherine Mary ; Ward, Alicia M ; Clark, Katherine ; Abernethy, Amy Pickar
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    Caresearch: finding and evaluating Australia's missing palliative care literature
    ( 2005) Tieman, Jennifer ; Abernethy, Amy Pickar ; Fazekas, Belinda Susan ; Currow, David Christopher
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    Challenges experienced by informal caregivers in cancer
    ( 2006) Girgis, Afaf ; Johnson, Claire ; Aoun, Samar M ; Currow, David Christopher
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    Comorbidity, age, race and stage at diagnosis in colorectal cancer: a retrospective, parallel analysis of two health systems
    ( 2008) Abbott, David H ; Grambow, Steven C ; Zafar, S Yousuf ; Abernethy, Amy Pickar ; Marcello, Jennifer E ; Herndon II, James E ; Rowe, Krista L ; Kolimaga, Jane T ; Zullig, Leah L ; Patwardhan, Meenal ; Provenzale, Dawn T
    Background : Stage at diagnosis plays a significant role in colorectal cancer (CRC) survival. Understanding which factors contribute to a more advanced stage at diagnosis is vital to improving overall survival. Comorbidity, race, and age are known to impact receipt of cancer therapy and survival, but the relationship of these factors to stage at diagnosis of CRC is less clear. The objective of this study is to investigate how comorbidity, race and age influence stage of CRC diagnosis. Methods : Two distinct healthcare populations in the United States (US) were retrospectively studied. Using the Cancer Care Outcomes Research and Surveillance Consortium database, we identified CRC patients treated at 15 Veterans Administration (VA) hospitals from 2003–2007. We assessed metastatic CRC patients treated from 2003–2006 at 10 non-VA, fee-for-service (FFS) practices. Stage at diagnosis was dichotomized (non-metastatic, metastatic). Race was dichotomized (white, non-white). Charlson comorbidity index and age at diagnosis were calculated. Associations between stage, comorbidity, race, and age were determined by logistic regression. Results : 342 VA and 340 FFS patients were included. Populations differed by the proportion of patients with metastatic CRC at diagnosis (VA 27% and FFS 77%) reflecting differences in eligibility criteria for inclusion. VA patients were mean (standard deviation; SD) age 67 (11), Charlson index 2.0 (1.0), and were 63% white. FFS patients were mean age 61 (13), Charlson index 1.6 (1.0), and were 73% white. In the VA cohort, higher comorbidity was associated with earlier stage at diagnosis after adjusting for age and race (odds ratio (OR) 0.76, 95% confidence interval (CI) 0.58–1.00; p = 0.045); no such significant relationship was identified in the FFS cohort (OR 1.09, 95% CI 0.82–1.44; p = 0.57). In both cohorts, no association was found between stage at diagnosis and either age or race. Conclusion : Higher comorbidity may lead to earlier stage of CRC diagnosis. Multiple factors, perhaps including increased interactions with the healthcare system due to comorbidity, might contribute to this finding. Such increased interactions are seen among patients within a healthcare system like the VA system in the US versus sporadic interactions which may be seen with FFS healthcare.
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    Deathbed phenomena reported by patients in palliative care: clinical opportunities and responses
    (Mark Allen Healthcare, 2015) Devery, Kim Ellen ; Rawlings, Deb ; Tieman, Jennifer ; Damarell, Raechel
    Over many decades and across many cultures and disciplines, the scientific literature reports unusual and hard to explain phenomena at the end of life. In the palliative care literature these reports are often anecdotal (Nelson, 2000), poorly understood or even treated just as hallucination (Morse 1994). In practice though, many health professionals have heard accounts from ill and dying patients of difficult to explain events (Pflaum and Kelley 1986, Wimbush and Hardie 2001, Mazzarino-Willett 2010) and while health professionals need also to recognise hallucinations arising from delirium, dementia or other neurologic or psychiatric disorders, underlying causality for these experiences may not be obvious or attributable. We have adopted the term Death Bed Phenomena (DBP) described here by Brayne and colleagues (2006, Page 17): “death may be heralded by deathbed phenomena such as visions that comfort the dying and prepare them spiritually for death” although these unexplainable accounts range from seeing dead relatives, hearing or feeling “other worlds” (Fenwick and Brayne, 2012), a significant dream, or patients being aware of the time of their own death. Patients and carers can be reluctant to discuss or divulge these phenomena for fear of being labelled ‘mad’ (Barbato et al, 1999) and health professionals (professionally trained and primarily educated in biomedical, scientific or rational models and ways of thinking) can find this a perplexing issue leaving them unsure how to respond to their patients’ stories and accounts (Brayne et al, 2006). In a quest to understand the clinical potential around these phenomena, we undertook this systematic review of the literature, with a specific focus on the palliative care population for whom death is an expected and foreseeable event due to progressive illness. While postulations on possible causes of these extraordinary end of life phenomena can be fascinating to read (Blanke, 2004), such phenomena are real for those who experience them. “Assumptions about their origins and credibility can alienate” patients and their families “at a critical time in their mourning or dying” (Barbato et al, 1999). Like others (Brayne et al 2006, Fenwick and Brayne 2011), Barbato and colleagues (1999) raise the potential within our professional role to normalise the experience and encourage the patient to find solace and emotional and spiritual wellbeing. In an effort to understand more fully these phenomena and their impact, health professionals, sociologists, psychologists and others have explored patient accounts of difficult to explain events and occurrences. Studies describing deathbed phenomena (DBP) (Barrett 1926, Sartori 2010) and near death experiences (NDE) (Morse 1994, Alvarado 2006, Bell et al 2010) emphasise the supportive spiritual potential of DBP (Ethier 2005, Fenwick and Brayne 2011), suggest additional therapies to further interpret DBP (Iordache and MacLeod, 2011), and put forward specific approaches for children and adolescents who experience NDE (Bell et al, 2010). DBP has been distinguished from NDE with the latter usually describing an unusual event or experience preceding an unexpected or accidental near death, or reported after successful cardiopulmonary resuscitation. While the nomenclature and definitions of DBP are developing in the literature, a comprehensive review about these occurrences reported by patients in a palliative care context is not available. DBP may be of especial significance in this population where cure is not possible and death at some point is a foreseeable event.
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    Designing Clinically Valuable Telehealth Resources: Processes to Develop a Community-Based Palliative Care Prototype
    (JMIR Publications, 2014-09-04) Tieman, Jennifer ; Morgan, Deidre D ; Swetenham, Kate ; To, Timothy H M ; Currow, David Christopher
    Background: Changing population demography and patterns of disease are increasing demands on the health system. Telehealth is seen as providing a mechanism to support community-based care, thus reducing pressure on hospital services and supporting consumer preferences for care in the home. Objective: This study examined the processes involved in developing a prototype telehealth intervention to support palliative care patients involved with a palliative care service living in the community. Methods: The challenges and considerations in developing the palliative care telehealth prototype were reviewed against the Center for eHealth Research (CeHRes) framework, a telehealth development model. The project activities to develop the prototype were specifically mapped against the model’s first four phases: multidisciplinary project management, contextual inquiry, value specification, and design. This project has been developed as part of the Telehealth in the Home: Aged and Palliative Care in South Australia initiative. Results: Significant issues were identified and subsequently addressed during concept and prototype development. The CeHRes approach highlighted the implicit diversity in views and opinions among participants and stakeholders and enabled issues to be considered, resolved, and incorporated during design through continuous engagement. Conclusions: The CeHRes model provided a mechanism that facilitated “better” solutions in the development of the palliative care prototype by addressing the inherent but potentially unrecognized differences in values and beliefs of participants. This collaboration enabled greater interaction and exchange among participants resulting in a more useful and clinically valuable telehealth prototype.
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    Do patients and carers find separate palliative care clinic consultations acceptable? A pilot study.
    (Mark Allen Healthcare, 2014) Swetenham, Kate ; Tieman, Jennifer ; Currow, David Christopher
    Patient and caregiver needs; is it important to separate them during the palliative care consultation clinic? – Findings from the pilot of an initial new client psychosocial assessment clinic
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    End-of-life care considerations for gay, lesbian, bisexual, and transgender individuals
    (Mark Allen Healthcare, 2012-01) Rawlings, Deb
    Negative social attitudes, discrimination, and homophobia affect gay, lesbian, bisexual, and transgender (GLBT) individuals during their lifetimes. These experiences can affect how these individuals access health services and interact with health professionals, resulting in adverse outcomes compared with their heterosexual counterparts. End-of-life experiences can also be shaped by these factors.There are implications for health professionals in terms of equity of access to targeted health care, preventive screening, and visibility in policy, as well as in principles of inclusiveness, dignity and respect, and competence in care. This article takes a brief look at some of the issues specific to the end-of-life care of GLBT individuals, using a case study as an illustrative example. Holistic care at the end of life is a familiar concept to palliative care nurses, but it is important to place greater emphasis on considering competence in aspects of care relating to sexuality.
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    Family Caregivers Who Would Be Unwilling to Provide Care at the End of Life Again: Findings from the Health Survey for England Population Survey
    (Public Library of Science, 2016) Johnson, M ; Allgar, V ; Macleod, U ; Jones, A ; Oliver, S ; Currow, David Christopher
    Background Family caregivers provide significant care at the end of life. We aimed to describe caregiver characteristics, and of those unwilling to repeat this role under the same circumstances. Methods Observational study of adults in private households (Health Survey for England [HSE]). Caregiving questions included: whether someone close to them died within past 5 years; relationship to the deceased; provision, intensity and duration of care; supportive/palliative care services used; willingness to care again; able to carry on with life. Comparison between those willing to care again or not used univariable analyses and an exploratory multiple logistic regression. A descriptive comparison with Health Omnibus Survey (Australia) data was conducted. Findings HSE response was 64%. 2167/8861 (25%) respondents had someone close to them die in the previous 5 years. Some level of personal care was provided by 645/8861 (7.3%). 57/632 (9%) former caregivers would be unwilling to provide care again irrespective of time since the death, duration of care, education and income. Younger age (≤65; odds ratio [OR] 2.79; 95% CI 136, 5.74) and use of palliative care services (odds ratio: 1.95, 95% CI: 1.09, 3.48) showed greater willingness to provide care again. Apart from use of palliative care services, findings were remarkably similar to the Australian data. Conclusions A significant group of caregivers would be unwilling to provide care again. Older people and those who had not used palliative care services were more likely to be unwilling to care again. Barriers preventing access for disadvantaged groups need to be overcome.
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    Filters and hubs: shortening the distance to palliative care evidence
    (CSIRO Publishing, 2012-01-16) Tieman, Jennifer
    Palliative care is an integral part of the care provided by GPs and other primary health care providers, and as Australia’s population ages and the palliative care needs of patients with end stage organ failure are recognised, this area of care is likely to increase. Using a Knowledge Translation framework, two strategies have been used to develop resources to support those providing palliative care in the community. PubMed Searches on a range of common palliative care topics and incorporating a palliative care filter provide an easy and validated mechanism to retrieve relevant literature. A “GP Hub” offers knowledge, skills and practical advice for GPs who provide palliative care in the community. Both resources are freely available within the CareSearch website ensuring immediate access to palliative care information and evidence when it is needed.
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    Find Me the Evidence: Connecting the Practitioner With the Evidence on Bereavement Care
    (Taylor and Francis, 2015-01) Tieman, Jennifer ; Hayman, Sarah L ; Hall, C
    This study reports on the development and application of a Bereavement Search Filter with a known level of retrieval performance to support access to the underlying knowledge base for bereavement care.
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    Grief and loss: the needs of the whole population
    ( 2004) Currow, David Christopher
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    Handheld computers for data entry: high tech has its problems too
    (BioMed Central - http://www.biomedcentral.com, 2007-02-20) Shelby-James, Tania Maree ; Abernethy, Amy Pickar ; McAlindon, Andrew ; Currow, David Christopher
    Background The use of handheld computers in medicine has increased in the last decade, they are now used in a variety of clinical settings. There is an underlying assumption that electronic data capture is more accurate that paper-based data methods have been rarely tested. This report documents a study to compare the accuracy of hand held computer data capture versus more traditional paper-based methods. Methods Clinical nurses involved in a randomised controlled trial collected patient information on a hand held computer in parallel with a paper-based data form. Both sets of data were entered into an access database and the hand held computer data compared to the paper-based data for discrepancies. Results Error rates from the handheld computers were 67.5 error per 1000 fields, compared to the accepted error rate of 10 per 10,000 field for paper-based double data entry. Error rates were highest in field containing a default value. Conclusion While popular with staff, unacceptable high error rates occurred with hand held computers. Training and ongoing monitoring are needed if hand held computers are to be used for clinical data collection.
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    Health-related quality of life measured using the EQ-5D-5L: South Australian population norms.
    (BioMed Central, 2016) McCaffrey, Nicola ; Kaambwa, Billingsley ; Currow, David Christopher ; Ratcliffe, Julie
    Background Although a five level version of the widely-used EuroQol 5 dimensions (EQ-5D) instrument has been developed, population norms are not yet available for Australia to inform the future valuation of health in economic evaluations. The aim of this study was to estimate HrQOL normative values for the EQ-5D-5L preference-based measure in a large, randomly selected, community sample in South Australia. Methods The EQ-5D-5L instrument was included in the 2013 South Australian Health Omnibus Survey, an interviewer-administered, face-to-face, cross-sectional survey. Respondents rated their level of impairment across dimensions (mobility, self-care, usual activities, pain/discomfort, and anxiety/depression) and global health rating on a visual analogue scale (EQ-VAS). Utility scores were derived using the newly-developed UK general population-based algorithm and relationships between utility and EQ-VAS scores and socio-demographic factors were also explored using multivariate regression analyses. Results Ultimately, 2,908 adults participated in the survey (63.4 % participation rate). The mean utility and EQ-VAS scores were 0.91 (95 CI 0.90, 0.91) and 78.55 (95 % CI 77.95, 79.15), respectively. Almost half of respondents reported no problems across all dimensions (42.8 %), whereas only 7.2 % rated their health >90 on the EQ-VAS (100 = the best health you can imagine). Younger age, male gender, longer duration of education, higher annual household income, employment and marriage/de facto relationships were all independent, statistically significant predictors of better health status (p < 0.01) measured with the EQ-VAS. Only age and employment status were associated with higher utility scores, indicating fundamental differences between these measures of health status. Conclusions This is the first Australian study to apply the EQ-5D-5L in a large, community sample. Overall, findings are consistent with EQ-5D-5L utility and VAS scores reported for other countries and indicate that the majority of South Australian adults report themselves in full health. When valuing health in Australian economic evaluations, the utility population norms can be used to estimate HrQOL. More generally, the EQ-VAS score may be a better measure of population health given the smaller ceiling effect and broader coverage of HrQOL dimensions. Further research is recommended to update EQ-5D-5L population norms using the Australian general population specific scoring algorithm once this becomes publically available.