ORCID Profile
0000-0003-1408-2484
Current Organisation
Western Sydney Local Health District
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Publisher: SAGE Publications
Date: 16-09-2023
DOI: 10.1177/02692163221122289
Abstract: For informal carers of people with life-limiting illness, social welfare policy related to income support and housing has been associated with varied psychosocial issues, yet remains relatively under-explored. An intersectional approach offers potential to illuminate erse experiences and implications. To explore the way in which caring in the context of life-limiting illness is framed within welfare policy, to articulate inequities encountered by carers, and to identify policy and practice recommendations. The Intersectionality-Based Policy Analysis (IBPA) Framework was used to situate findings of a broader qualitative study. Data were collected via semi-structured interviews with participants who were bereaved carers ( n = 12), welfare workers ( n = 14) and palliative care workers ( n = 7), between November 2018 and April 2020, in an Australian region associated with socioeconomic disadvantage. Five elements of IBPA were applied to the products of analysis of this data. Use of the IBPA Framework revealed that representations of carers and causes of their welfare needs in policy were underpinned by several assumptions including that caring and grieving periods are temporary or brief, and that carers have adequate capacity to navigate complex systems. Policy and processes had differentiated consequences for carers, with those occupying certain social locations prone to accumulating disadvantage. This intersectional analysis establishes critical exploration of the framing and consequences of welfare policy for carers of people with life-limiting illness, presented in a novel conceptual model. Implications relate to intersectoral development of structural competency, responsiveness to structurally vulnerable carers in clinical practice, and needed policy changes.
Publisher: SAGE Publications
Date: 28-10-2021
Abstract: Caring at end-of-life is associated with financial burden, economic disadvantage, and psychosocial sequelae. Health and social welfare systems play a significant role in coordinating practical resources and support in this context. However, little is known about social policy and interactions with public institutions that shape experiences of informal carers with social welfare needs at end-of-life. To explore ways in which palliative care and welfare sector workers perceive and approach experiences and needs of the carers of people with life-limiting illnesses who receive government income support or housing assistance, in an area of recognised socioeconomic disadvantage. An interpretive descriptive study employed in-depth, qualitative interviews to explore participants’ reflections on working with carers of someone with a life-limiting illness. Data were analysed using the framework approach. Twenty-one workers employed within three public services in Western Sydney were recruited. Workers articulated understandings of welfare policy and its consequences for carers at end-of-life, including precariousness in relation to financial and housing circumstances. Identified resources and barriers to the navigation of social welfare needs by carers were categorised as personal, interpersonal and structural. Caring at end-of-life while navigating welfare needs was seen to be associated with precariousness by participants, particularly for carers positioned in vulnerable social locations. Findings highlighted experiences of burdensome system navigation, inconsistent processes and inequity. Further exploration of structural determinants of experience is needed, including aspects of palliative care and welfare practice and investment in inter-agency infrastructure for supporting carers at end-of-life.
Publisher: Hindawi Limited
Date: 11-03-2021
DOI: 10.1111/HSC.13339
Publisher: Informa UK Limited
Date: 03-07-2018
DOI: 10.1080/15524256.2018.1495140
Abstract: Caregiving at the end-of-life has been associated with a range of physical, spiritual, social, and psychological outcomes, and influenced by encounters with providers of specialist palliative care. The purpose of this qualitative study was to explore experiences of bereaved carers of people with a life-limiting illness, in the context of care provided through a Western Sydney supportive and palliative care service. Thirteen bereaved caregivers participated in semi-structured, in-depth interviews. Transcripts were analyzed using a thematic approach, informed by thematic networks. Four domains appeared to mediate carer experiences: confrontations with trauma, suffering, and death navigating transitions and boundaries and the caregiving role as liminal space encountering connection in formal care contexts and negotiating system issues. This study is one of the first to explore caregiver experiences within a low socioeconomic population in Western Sydney and provides a nuanced understanding of factors which may shape experiences of palliative care. Findings suggest that ongoing attention to the cultivation of skilful practitioners is warranted able to companion caregivers in a manner attuned to the potential for trauma in the context of expected death. Additionally, findings call for investment in specialist sites of care alongside greater attention to public health approaches to palliative care.
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 28-09-2021
DOI: 10.1161/CIRCULATIONAHA.120.046791
Abstract: Ischemia with no obstructive coronary artery disease (INOCA) is common and has an adverse prognosis. We set out to describe the natural history of symptoms and ischemia in INOCA. CIAO-ISCHEMIA (Changes in Ischemia and Angina over One Year in ISCHEMIA Trial Screen Failures With INOCA) was an international cohort study conducted from 2014 to 2019 involving angina assessments (Seattle Angina Questionnaire) and stress echocardiograms 1 year apart. This was an ancillary study that included patients with a history of angina who were not randomly assigned in the ISCHEMIA trial. Stress-induced wall motion abnormalities were determined by an echocardiographic core laboratory blinded to symptoms, coronary artery disease status, and test timing. Medical therapy was at the discretion of treating physicians. The primary outcome was the correlation between the changes in the Seattle Angina Questionnaire angina frequency score and changes in echocardiographic ischemia. We also analyzed predictors of 1-year changes in both angina and ischemia, and we compared CIAO participants with ISCHEMIA participants with obstructive coronary artery disease who had stress echocardiography before enrollment, as CIAO participants did. INOCA participants in CIAO were more often female (66% of 208 versus 26% of 865 ISCHEMIA participants with obstructive coronary artery disease, P .001), but the magnitude of ischemia was similar (median 4 ischemic segments [interquartile range, 3–5] both groups). Ischemia and angina were not significantly correlated at enrollment in CIAO ( P =0.46) or ISCHEMIA stress echocardiography participants ( P =0.35). At 1 year, the stress echocardiogram was normal in half of CIAO participants, and 23% had moderate or severe ischemia (≥3 ischemic segments). Angina improved in 43% and worsened in 14%. Change in ischemia over 1 year was not significantly correlated with change in angina (ρ=0.029). Improvement in ischemia and angina were common in INOCA but not correlated. Our INOCA cohort had a degree of inducible wall motion abnormalities similar to concurrently enrolled ISCHEMIA participants with obstructive coronary artery disease. Our results highlight the complex nature of INOCA pathophysiology and the multifactorial nature of angina. URL: www.clinicaltrials.gov . Unique identifier: NCT02347215.
Publisher: Elsevier BV
Date: 12-2022
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 11-2021
DOI: 10.1161/CIRCOUTCOMES.121.007880
Abstract: Suspected myocardial infarction (MI) with nonobstructive coronary arteries (MINOCA) occurs in ≈5% to 10% of patients with MI referred for coronary angiography. The prognosis of these patients may differ to those with MI and obstructive coronary artery disease (MI-CAD) and those without a MI (patients without known history of MI [No-MI]). The primary objective of this study is to evaluate the 12-month all-cause mortality of patients with MINOCA. Using Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, the terms “MI,” “nonobstructive,” “angiography,” and “prognosis” were searched in PubMed and Embase databases from inception to December 2018, including original, English language MINOCA studies with consecutive patients. Publications with a heterogeneous cohort, unreported coronary stenosis, or exclusively focusing on MINOCA-mimicking conditions, were excluded. Unpublished data were obtained from the MINOCA Global Collaboration. Data were pooled and analyzed using Paule-Mandel, Hartung, Knapp, Sidik & Jonkman, or restricted maximum-likelihood random-effects meta-analysis methodology. Heterogeneity was assessed using Cochran’s Q and I 2 statistics. The primary outcome was 12-month all-cause mortality in patients with MINOCA, with secondary comparisons to MI-CAD and No-MI. The 23 eligible studies yielded 55 369 suspected MINOCA, 485 382 MI-CAD, and 33 074 No-MI. Pooled meta-analysis of 14 MINOCA studies accounting for 30 733 patients revealed an unadjusted 12-month all-cause mortality rate of 3.4% (95% CI, 2.6%–4.2%) and reinfarction (n=27 605 10 studies) in 2.6% (95% CI, 1.7%–3.5%). MINOCA had a lower 12-month all-cause mortality than those with MI-CAD (3.3% [95% CI, 2.5%–4.1%] versus 5.6% [95% CI, 4.1%–7.0%] odds ratio, 0.60 [95% CI, 0.52–0.70], P .001). In contrast, there was a statistically nonsignificant trend towards increased 12-month all-cause mortality in patients with MINOCA (2.6% [95% CI, 0%–5.9%]) compared with No-MI (0.7% [95% CI, 0.1%–1.3%] odds ratio, 3.71 [95% CI, 0.58–23.61], P =0.09). In the largest contemporary MINOCA meta-analysis to date, patients with suspected MINOCA had a favorable prognosis compared with MI-CAD, but statistically nonsignificant trend toward worse outcomes compared to those with No-MI. URL: www.crd.york.ac.uk/PROSPERO/ Unique identifier: CRD42020145356.
Publisher: Informa UK Limited
Date: 20-02-2019
DOI: 10.1080/01676830.2018.1440608
Abstract: A 9-year-old girl was reviewed by a tertiary ophthalmology service after being hit in her right upper eyelid by a fish whilst swimming. Initial wound exploration demonstrated fish scales in the wound. She was first treated conservatively with washout of the 5-mm wound and was discharged with oral ciprofloxacin. Five days later, the patient re-presented with a worsened ptosis due to periorbital swelling. Ultrasound of the upper lid demonstrated a foreign body in the upper lid. The patient was taken to theatre and, with the assistance of intraoperative ultrasound, the jaws of a needle fish were removed from the upper lid. The case highlights the importance of ultrasound and its intraoperative utility in cases of trauma and a suspicion of retained foreign bodies as well as the potential danger of fish injuries off the West Australian coast.
Publisher: Elsevier BV
Date: 12-2019
DOI: 10.1016/J.SOCSCIMED.2019.112599
Abstract: An emphasis on in idual intervention and psychological complexity has characterised research on bereavement following an experience of life-limiting illness. Exploration of "structural vulnerability" as a positionality produced by social and structural inequity could provide insights into areas of practice and policy in need of development. This scoping review sought to summarise published research on experiences of social and structural inequities in the context of bereavement due to life-limiting illness. Underpinned by recognised methodological frameworks, systematic searches were conducted of four electronic databases. Eligible studies attended to bereavement experience following the death of an adult due to life-limiting illness, included consideration of social and structural inequities, and were undertaken in high income countries between 1990 and 2018. Following thematic analysis, a conceptual framework was developed. Of 322 records, 62 full text articles were retrieved and 15 papers met inclusion criteria. Studies highlighted unequal social status in bereavement related to gender, class, sexuality, ethnicity and age, with structural inequity experienced in interactions with institutions and social networks. Studies also identified that the experience of bereavement itself may be accompanied by exposure to disenfranchising systems and processes. Structural vulnerability appeared to be associated with outcomes including psychological distress, social disenfranchisement and practical concerns such as financial strain, housing insecurity and employment issues. Social and structural inequities potentially contribute to layered and patterned experiences of disadvantage and disenfranchisement following expected death, with implications for in idual agency. Findings point to the need for consideration of socio-ecological approaches within and beyond specialist palliative care, involving development of more responsive social policy, coordinated advocacy, and systemic capacity building regarding experiences of grief, to better support populations positioned as structurally vulnerable in bereavement.
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 07-2019
DOI: 10.1097/OR9.0000000000000003
Abstract: Care and death at home are generally thought to be beneficial for families. However, there may be bereavement experiences and support needs, which are specific to family caregivers providing end-of-life care in their home. The Palliative Care Home Support Program in New South Wales, Australia, provides end-of-life care packages for patients who wish to die at home. These packages provide up to 48 hours of specialized supportive palliative home-based care, day or night, by community workers specifically trained for the task, working as part of existing community palliative care multidisciplinary teams. Care packages may include assistance with personal hygiene, carer respite, and domestic assistance. As part of a larger longitudinal mixed-methods study, 28 bereaved caregivers who experienced a home death and/or received the care packages undertook in-depth interviews. Narrative thematic analysis was undertaken to explore their experiences at 6 months post death. Twenty-eight caregivers were experienced or planned for a home death and 21 had a package in place. Five themes were identified: “the achievements of a home death” “taking on the mantle” “the burden of witnessing the dying process” “home as our space/their space” and “resistance or submission to the ideals of best place of care for family caregivers.” Bereaved caregivers provided accounts of their interactions with health care providers depicting a complex relationship with the care system. Some families struggled to manage boundaries of home and private space as care needs escalated. Ideals about best care and home death are sometimes conflicted, without easy consensus between patient, family, and service providers. Models of care based on assumptions that home death is straightforwardly beneficial may cause unintended consequences. For future policy, providing care in the private space of the home requires close attention to family concerns and outcomes.
Publisher: SAGE Publications
Date: 26-11-2021
DOI: 10.1177/10497323211046875
Abstract: Caring for and bereavement following the death of someone with a life-limiting illness may precipitate social welfare needs related to income support and housing. Nevertheless, carer experiences of welfare policy and institutions have not received significant attention. This qualitative study explored experiences of carers who navigated social welfare policy while caring for someone with a life-limiting illness, and in bereavement. In-depth interviews were conducted with 12 bereaved carers in an area associated with socioeconomic disadvantage. Carers differentially encountered precariousness, with some experiencing structural vulnerability. These positionalities appeared to be shaped by policy and process-related burdens, perceptions of the welfare state, and degrees of legitimisation or disenfranchisement of forms of capital and coping orientations. Recommendations that may improve carer experience were identified. Implications relate to the need for an expanded conceptualisation of vulnerability in health and welfare practice, policy that authentically validates caring and grieving, and upstream strategies that address inequity.
No related grants have been discovered for Kristin Bindley.