Exploring the 'citizen organization': an evaluation of a regional Australian community-based palliative care service model.

Background: Little Haven is a rural, community-based specialist palliative care service in Gympie, Australia. Its goals are to provide highest quality of care, support and education for those experiencing or anticipating serious illness and loss. Families and communities work alongside clinical services, with community engagement influencing compassionate care and support of dying people, their families and communities. Public Health Palliative Care promotes community engagement by community-based palliative care services and is grounded in equal partnerships between civic life, community members, patients and carers, and service providers. This takes many forms, including what we have termed the 'citizen organization'. Objectives: This paper reports on an evaluation of Little Haven's model of care and explores the organization's place as a 'citizen' of the community it services. Design: A co-designed evaluation approach utilizing mixed-method design is used. Methods: Multiple data sources obtained a broad perspective of the model of care including primary qualitative data from current patients, current carers, staff, volunteers and organizational stakeholders (interviews and focus groups); and secondary quantitative survey data from bereaved carers. Thematic analysis and descriptive statistics were generated. Results: This model of care demonstrates common service elements including early access to holistic, patient/family-centred, specialized palliative care at little or no cost to users, with strong community engagement. These elements enable high-quality care for patients and carers who describe the support as 'over and above', enabling good quality of life and care at home. Staff and volunteers perceive the built-in flexibility of the model as critical to its outcomes; the interface between the service and the community is similarly stressed as a key service element. Organizational stakeholders observed the model as a product of local activism and accountability to the community. Conclusion: All participant groups agree the service model enables the delivery of excellent care. The construction of a community palliative care service as a citizen organization emerged as a new concept.

'Citizen organization': an Australian community-based palliative care service model Little Haven is a rural, community-based specialist palliative care service in Gympie, Australia. It aims to provide highest quality of care, support and education for those experiencing or anticipating serious illness and loss. Families and communities work alongside clinical services, with community engagement influencing compassionate care and support of dying people, their families and communities. Public Health Palliative Care promotes community engagement by community-based palliative care services in equal partnerships between civic organizations, community members, patients and carers, and service providers. We undertook an evaluation of Little Haven's model of care by speaking with current patients, current and past carers, staff, volunteers and stakeholders about their experiences of Little Haven. We found that Little Haven's model contains the essential elements of a palliative care service and provides early access to holistic, patient/family-centred, specialized palliative care at little or no cost to users. They have strong community engagement with a strong background in community activism. We identified that Little Haven's 'being in the community' goes beyond service provision or even sentiment. We observed a symbiotic relationship between the organization and the community it supports in what we have termed the 'citizen organization'. The distinctive characteristic of the citizen organization is its inseparability from the community in which it dwells.

The Behavioral Adaptations and Barriers of Patients Employing Non-Pharmacological Strategies for Cancer Pain Management-A Qualitative Study.

The use of non-pharmacological strategies to complement pharmacological approaches can enhance cancer pain management by promoting patient autonomy and increasing management effectiveness. This study aimed to explore the required behavioral adaptations and situational barriers that cancer patients encounter when utilizing non-pharmacological strategies to manage pain. We adopted an exploratory-descriptive qualitative research approach, purposive sampling, and semi-structured interview guidelines to conduct face-to-face interviews with 18 cancer patients experiencing moderate or severe levels of worst pain. Data were analyzed using inductive content analysis to explore patients' experiences. Five themes described the behavioral adaptations of patients using non-pharmacological strategies to deal with cancer pain: finding complementary therapies, utilizing assistive skills, adapting to assistive skills, diverting attention, and seeking help. Situational barriers faced by patients include being in the workplace or in a climate-affected environment. Behavioral adaptation is necessary for non-pharmacological strategies to coping with cancer pain. The behavioral skills can help the patients to overcome situational barriers to engagement with these strategies. Thus, health professionals are expected to help the patients acquire adequate behavioral adaptation and skills for self-pain management, and assess the effectiveness of the strategies.

The Compassionate Communities Connectors programme: experiences of supported families and referring healthcare providers.

Background and Aim: Comprehensive evaluations that include the experience of patients and service providers are vital if interventions are to be translated into the standard practice of health services and allow formal networks to work as partners with informal community networks. However, published evaluations are limited in the palliative care volunteering literature. The objective of the study is to explore the experiences and views of both patients and their family carers who received support and their referring healthcare providers concerning their participation in the Compassionate Communities Connectors programme, in the south-west region of Western Australia. Connectors identified and addressed gaps in community and healthcare provision by accessing resources and mobilising social networks of people with life-limiting illnesses. The perspectives of patients, carers and service providers concerning the feasibility and acceptability of the intervention were sought. Methods: Semistructured interviews were undertaken with 28 patients/families and 12 healthcare providers, resulting in 47 interviews in total (March 2021-April 2022). An inductive content analysis was used in analysing interview transcripts to identify key themes. Results: Families greatly appreciated the support and enablement received from the Connectors. Healthcare providers were impressed with the high level of resourcefulness exhibited by the Connectors and perceived a great need for the programme, particularly for those socially isolated. Three themes captured the patients'/families' perspectives: connector as an advocate, increasing social connectedness and taking the pressure off families. Healthcare providers' perspectives were captured in three themes: reducing social isolation, filling a gap in service provision and building the capacity of the service. Conclusions: Perspectives of patients/families and healthcare providers demonstrated the mediating role of Connectors. Each group saw the Connectors' contribution through the lens of their particular interests or needs. However, there were indications that the connection was shifting the way each group understood and practised care, encouraging or restoring agency to families and reminding healthcare providers that collaborating beyond the boundaries of their roles actually enhances the whole ecology of care. Using a Compassionate Communities approach to mobilise health and community sectors has the potential to develop a more holistic approach that addresses the social, practical and emotional domains of care.

Burden of Family Caregivers of Patients with Oral Cancer in Home Care in Taiwan.

Oral cancer is currently the fourth leading cause of cancer-related death in Taiwan. The complications and side effects of oral cancer treatment cause a tremendous burden on patients' family caregivers. This study explored the burden on primary family caregivers of patients with oral cancer and its related factors. One hundred and seven patients with oral cancer and their primary family caregivers were included through convenience sampling. The Caregiver Reaction Assessment (CRA) scale was employed as the primary research instrument. The primary factors of caregiver burden, in descending order, were disrupted schedules (M = 3.19, SD = 0.84), a lack of family support (M = 2.82, SD = 0.85), health problems (M = 2.67, SD = 0.68), and financial problems (M = 2.59, SD = 0.84). The CRA scores of the caregivers differed significantly in terms of education level (t = 2.57, p < 0.05) and household income (F = 4.62, p < 0.05), which significantly predicted caregiver burden (R2 = 0.11, F = 4.32, p = 0.007). The study results provide a reference for healthcare professionals to identify the factors for family caregiver burden, as well as the characteristics of patients and family caregivers particularly vulnerable to caregiver burden, thus improving family-centred care.

Change Trajectory of Symptom Distress, Coping Strategies, and Spiritual Wellbeing in Colorectal Cancer Patients Undergoing Chemotherapy.

Impacts caused by cancer and associated treatment may change with time. The objective of this study is to examine the change trajectory of symptom distress, coping strategies, and spiritual wellbeing in colorectal cancer patients during chemotherapy and to further examine the predictors of spiritual wellbeing. A prospective longitudinal repeated measures study design was employed. A total of 97 patients undergoing chemotherapy for the first time were enrolled. A structured questionnaire was used to collect data at three timepoints, which were before chemotherapy (T0), during chemotherapy (T1: 3 months after T0), and after chemotherapy (T2: 6 months after T0). The results of this study show that patients have significantly lower spiritual wellbeing and significantly higher symptom distress during chemotherapy treatment (T1). Family support (B = 0.39, p = 0.007) and problem-focused coping strategies (B = 0.47, p = 0.001) are significant predictors of spiritual wellbeing before chemotherapy (T0). Symptom distress (B = -0.18, p = 0.048) and problem-focused coping strategies (B = 0.26, p = 0.028) are significant predictors of spiritual wellbeing during chemotherapy (T1). The results provide care recommendations for different stages of chemotherapy to help to achieve more precise patient care and improve care quality.

Public Health Palliative Care and Public Palliative Care Education.

This Special Issue, "Public Health Palliative Care (PHPC) and Public Palliative Care Education (PPCE)", highlights recent advances and challenges in PHPC and PPCE [...].

Total Joint Arthroplasty in Patients With an Implanted Left Ventricular Assist Device.

Left ventricular assist devices (LVADs) may be used as bridge therapy or destination therapy in heart failure patients. Total joint arthroplasty may improve the functional status of patients limited by arthritis. This retrospective case series evaluated patients with an implanted LVAD who underwent a total joint arthroplasty at 1 institution from 2012 to present. Five patients underwent 12 surgeries with 7 primary arthroplasties and 5 revisions. Their mortality, length of stay, coagulopathic events, incidence of infection or revision arthroplasty, and heart transplantation were evaluated, and is the largest study to date of this population. Two patients expired from thrombotic events while 3 progressed to heart transplantation. Joint arthroplasty is feasible in patients with an implanted LVAD with expected risk and perioperative multidisciplinary collaboration.

Relationship between prescribed opioids, pain management satisfaction, and pain intensity in oncology outpatients.

BACKGROUND: Pain is the most severe and commonest symptom for patients with cancer. Patients' pain management satisfaction is an essential indicator of quality care and further affects their willingness to seek care. PURPOSE: This study aimed to examine the correlations between patients' prescribed opioids, pain management satisfaction, and pain intensity. METHODS: This study adopted a cross-sectional correlation design, recruited a total of 123 patients with cancer pain through convenience sampling, and used two research scales, namely the Chinese version of the Pain Treatment Satisfaction Scale and the Brief Pain Inventory-Short Form. RESULTS: The findings indicated that the correlations of prescribed opioid dosage with pain management satisfaction (r = - .10, p > .05) and pain intensity (worst pain, least pain, average pain, and pain right now; r = - .05 to .01, p > .05) were nonsignificant. The correlations of pain management satisfaction with pain intensity (r = .24 to .32, p < .01), pain interference (r = .32, p < .01), and pain relief (r = - .25, p < .01) were all significant, but that with the worst pain (r = .06, p > .05) was nonsignificant. CONCLUSIONS: Medical professionals providing cancer pain management should focus on medicines strategies and individuals' pain relief requirements. In particular, patients with the worst pain require extra investigations into their needs, and their satisfaction with their level of pain should be further evaluated.

Developing a death literacy index.

Performing end-of-life care can be a catalyst for developing a capacity called death literacy. This study aimed to develop a comprehensive and useable measure of death literacy that has the potential to assess interventions with individuals, communities, and societies. Using a mixed methods approach, a Death Literacy Index was developed from personal narratives and input from practitioners and experts. Refined on a sample of 1330 Australians using exploratory and confirmatory factor analysis and structural equation modeling, a 29-item Death Literacy Index was found to be reliable and demonstrated construct validity. Further studies are needed to test predictive validity.

Taking the Monte-Carlo gamble: How not to buckle under the pressure!

Consistent buckling distortions of a large membrane patch (200 × 200 Å) are observed during molecular dynamics (MD) simulations using the Monte-Carlo (MC) barostat in combination with a hard Lennard-Jones (LJ) cutoff. The buckling behavior is independent of both the simulation engine and the force field but requires the MC barostat-hard LJ cutoff combination. Similar simulations of a smaller patch (90 × 90 Å) do not show buckling, but do show a small, systematic reduction in the surface area accompanied by ~1 Å thickening suggestive of compression. We show that a mismatch in the way potentials and forces are handled in the dynamical equations versus the MC barostat results in a compressive load on the membrane. Moreover, a straightforward application of elasticity theory reveals that a minimal compression of the linear dimensions of the membrane, inversely proportional to the edge length, is required for buckling, explaining this differential behavior. We recommend always using LJ force or potential-switching when the MC barostat is employed to avoid undesirable membrane deformations.

Factors influencing the coping strategies of liver cancer patients undergoing transarterial chemoembolization.

AIM: This study explored the association between social support, resilience and coping strategies among patients with liver cancer and evaluated the extent to which patients' use of various coping strategies can be explained by social support and resilience. METHODS: This cross-sectional study comprised 119 patients who experienced transarterial chemoembolization related to liver cancer and who completed the Social Support Scale, the Resilience Scale and the Ways of Coping Checklist-Revised. RESULTS: Results indicated a significant positive correlation between social support and use of problem-focused coping strategies and overall coping strategies. In addition, results showed a significant positive correlation between resilience and use of problem-focused strategies, emotion-focused strategies and overall coping strategies. Social support accounted for 14% of variance in use of problem-focused strategies and 7.6% of the variance in overall coping strategies. Resilience accounted for 30.5% of the variance in use of problem-focused strategies, 8.5% in use of emotion-focused strategies and 21.6% of overall coping strategies. CONCLUSION: Results of this study highlight the importance of social support and resilience in patients' coping strategies related to liver cancer treatment.

Qualitative Exploration of Dimensions of Restrictive Feeding With Australian Mothers of 6-Year-Olds.

OBJECTIVE: Explore the nature and dimensions of restrictive feeding with mothers of 6-year-olds. DESIGN: Semistructured interviews with mothers. Conversations were audio-recorded and transcribed verbatim. SETTING: Brisbane and Adelaide, Australia. PARTICIPANTS: Twenty-nine mothers of 6-year-olds. PHENOMENON OF INTEREST: Mothers' restrictive feeding practices. ANALYSIS: Qualitative thematic analysis. RESULTS: This study revealed 6 key themes relating to the restrictive feeding phenomenon: restriction of specific foods and drinks; restrictive feeding practices; mothers' motivation; mothers' preferences for restricted foods; patterns over time; and relationships with other controlling feeding practices. Parents' restrictive feeding practices are likely to be inherently inconsistent, with mothers reportedly varying their practices across different restricted foods, contexts, day to day, and as children age. Mothers intended to either totally restrict or restrict a food/drink in moderation, and these intentions presented qualitatively distinct characteristics across themes. Mothers commonly referred to foods/drinks restricted in moderation as treats, and their liking for these restricted foods/drinks was related to higher child access. CONCLUSIONS AND IMPLICATIONS: This study provides insights into the nature and dimensions of restrictive feeding. Further research is proposed to clarify these findings and examine the effects of child access, types of restrictive feeding practices, and parent communication on child preferences for restricted foods and drinks across a range of cultural groups.

Pain associated with cemented and uncemented long-stemmed tibial components in revision total knee arthroplasty.

AIMS: Stemmed tibial components are frequently used in revision total knee arthroplasty (TKA). The purpose of this study was to evaluate patient satisfaction, overall pain, and diaphyseal tibial pain in patients who underwent revision TKA with cemented or uncemented stemmed tibial components. METHODS: This is a retrospective cohort study involving 110 patients with revision TKA with cemented versus uncemented stemmed tibial components. Patients who underwent revision TKA with stemmed tibial components over a 15-year period at a single institution with at least two-year follow-up were assessed. Pain was evaluated through postal surveys. There were 63 patients with cemented tibial stems and 47 with uncemented stems. Radiographs and Knee Society Scores were used to evaluate for objective findings associated with pain or patient dissatisfaction. Postal surveys were analyzed using Fisher's exact test and the independent-samples t-test. Logistic regression was used to adjust for age, sex, and preoperative bone loss. RESULTS: No statistically significant differences in stem length, operative side, or indications for revision were found between the two cohorts. Tibial pain at the end of the stem was present in 25.3% (16/63) of cemented stems and 25.5% (12/47) of uncemented stems (p = 1.000); 74.6% (47/63) of cemented patients and 78.7% (37/47) of uncemented patients were satisfied following revision TKA (p = 0.657). CONCLUSION: There were no differences in patient satisfaction, overall pain, and diaphyseal tibial pain in cemented and uncemented stemmed tibial components in revision TKA. Patient factors, rather than implant selection and surgical technique, likely play a large role in the presence of postoperative pain. Stemmed tibial components have been shown to be a possible source of pain in revision TKA. There is no difference in patient satisfaction or postoperative pain with cemented or uncemented stemmed tibial components in revision TKA. Cite this article: Bone Joint J 2021;103-B(6 Supple A):165-170.

K2P channel C-type gating involves asymmetric selectivity filter order-disorder transitions.

K2P potassium channels regulate cellular excitability using their selectivity filter (C-type) gate. C-type gating mechanisms, best characterized in homotetrameric potassium channels, remain controversial and are attributed to selectivity filter pinching, dilation, or subtle structural changes. The extent to which such mechanisms control C-type gating of innately heterodimeric K2Ps is unknown. Here, combining K2P2.1 (TREK-1) x-ray crystallography in different potassium concentrations, potassium anomalous scattering, molecular dynamics, and electrophysiology, we uncover unprecedented, asymmetric, potassium-dependent conformational changes that underlie K2P C-type gating. These asymmetric order-disorder transitions, enabled by the K2P heterodimeric architecture, encompass pinching and dilation, disrupt the S1 and S2 ion binding sites, require the uniquely long K2P SF2-M4 loop and conserved "M3 glutamate network," and are suppressed by the K2P C-type gate activator ML335. These findings demonstrate that two distinct C-type gating mechanisms can operate in one channel and underscore the SF2-M4 loop as a target for K2P channel modulator development.

A systems-biology approach to molecular machines: Exploration of alternative transporter mechanisms.

Motivated by growing evidence for pathway heterogeneity and alternative functions of molecular machines, we demonstrate a computational approach for investigating two questions: (1) Are there multiple mechanisms (state-space pathways) by which a machine can perform a given function, such as cotransport across a membrane? (2) How can additional functionality, such as proofreading/error-correction, be built into machine function using standard biochemical processes? Answers to these questions will aid both the understanding of molecular-scale cell biology and the design of synthetic machines. Focusing on transport in this initial study, we sample a variety of mechanisms by employing Metropolis Markov chain Monte Carlo. Trial moves adjust transition rates among an automatically generated set of conformational and binding states while maintaining fidelity to thermodynamic principles and a user-supplied fitness/functionality goal. Each accepted move generates a new model. The simulations yield both single and mixed reaction pathways for cotransport in a simple environment with a single substrate along with a driving ion. In a "competitive" environment including an additional decoy substrate, several qualitatively distinct reaction pathways are found which are capable of extremely high discrimination coupled to a leak of the driving ion, akin to proofreading. The array of functional models would be difficult to find by intuition alone in the complex state-spaces of interest.

A kinetic mechanism for enhanced selectivity of membrane transport.

Membrane transport is generally thought to occur via an alternating access mechanism in which the transporter adopts at least two states, accessible from two different sides of the membrane to exchange substrates from the extracellular environment and the cytoplasm or from the cytoplasm and the intracellular matrix of the organelles (only in eukaryotes). In recent years, a number of high resolution structures have supported this general framework for a wide class of transport molecules, although additional states along the transport pathway are emerging as critically important. Given that substrate binding is often weak in order to enhance overall transport rates, there exists the distinct possibility that transporters may transport the incorrect substrate. This is certainly the case for many pharmaceutical compounds that are absorbed in the gut or cross the blood brain barrier through endogenous transporters. Docking studies on the bacterial sugar transporter vSGLT reveal that many highly toxic compounds are compatible with binding to the orthosteric site, further motivating the selective pressure for additional modes of selectivity. Motivated by recent work in which we observed failed substrate delivery in a molecular dynamics simulation where the energized ion still goes down its concentration gradient, we hypothesize that some transporters evolved to harness this 'slip' mechanism to increase substrate selectivity and reduce the uptake of toxic molecules. Here, we test this idea by constructing and exploring a kinetic transport model that includes a slip pathway. While slip reduces the overall productive flux, when coupled with a second toxic molecule that is more prone to slippage, the overall substrate selectivity dramatically increases, suppressing the accumulation of the incorrect compound. We show that the mathematical framework for increased substrate selectivity in our model is analogous to the classic proofreading mechanism originally proposed for tRNA synthase; however, because the transport cycle is reversible we identified conditions in which the selectivity is essentially infinite and incorrect substrates are exported from the cell in a 'detoxification' mode. The cellular consequences of proofreading and membrane slippage are discussed as well as the impact on future drug development.

A qualitative meta-synthesis investigating the experiences of the patient's family when treatment is withdrawn in the intensive care unit.

AIM: To synthesize qualitative studies of patients' families' experiences and perceptions of end-of-life care in the intensive care unit when life-sustaining treatments are withdrawn. DESIGN: Qualitative meta-synthesis. DATA SOURCES: Comprehensive search of 18 electronic databases for qualitative studies published between January 2005 - February 2019. REVIEW METHOD: Meta-aggregation. RESULTS: Thirteen studies met the inclusion criteria. A conceptual 'Model of Preparedness' was developed reflecting the elements of end-of-life care most valued by families: 'End-of-life communication'; 'Valued attributes of patient care'; 'Preparing the family'; 'Supporting the family'; and 'Bereavement care'. CONCLUSION: A family-centred approach to end-of-life care that acknowledges the values and preferences of families in the intensive care unit is important. Families have unmet needs related to communication, support, and bereavement care. Effective communication and support are central to preparedness and if these care components are in place, families can be better equipped to manage the death, their sadness, loss, and grief. The findings suggest that health professionals may benefit from specialist end-of-life care education to support families and guide the establishment of preparedness. IMPACT: Understanding the role and characteristics of preparedness during end-of-life care will inform future practice in the intensive care unit and may improve family member satisfaction with care and recovery from loss. Nurses are optimally positioned to address the perceived shortfalls in end-of-life care. These findings have implications for health education, policies, and standards for end-of-life care in the intensive care unit.

Palliative care in the context of immune and targeted therapies: A qualitative study of bereaved carers' experiences in metastatic melanoma.

BACKGROUND: Immune and targeted therapies continue to transform treatment outcomes for those with metastatic melanoma. However, the role of palliative care within this treatment paradigm is not well understood. AIM: To explore bereaved carers' experiences of immune and targeted therapy treatment options towards end of life for patients with metastatic melanoma. DESIGN: An interpretive, qualitative study using a social constructivist framework was utilised. Interviews were recorded, transcribed and analysed using grounded theory methods. SETTING/PARTICIPANTS: Participants (n = 20) were bereaved carers of patients who had received some form of immune and/or targeted therapy at one of three Australian metropolitan melanoma treatment centres. RESULTS: Carers struggled to reconcile the positive discourse around the success of immune and targeted therapies in achieving long-term disease control, and the underlying uncertainty in predicting individual responses to therapy. Expectations that immune and targeted therapies necessarily provide longer-term survival were evident. Difficulty in prognostication due to clinical uncertainty and a desire to maintain hope resulted in lack of preparedness for treatment failure and end of life. CONCLUSION: Immune and targeted therapies have resulted in increased prognostic challenges. There is a need to engage, educate and support patients and carers to prepare and plan amid these challenges. Educational initiatives must focus on improving communication between patients, carers and clinicians; the differences between palliative and end-of-life care; and increased competency of clinicians in having goals-of-care discussions. Clinicians must recognise and communicate the benefit of collaborative palliative care to meet patient and family needs holistically and comprehensively.

Phase protection of Fano-Feshbach resonances.

Decay of bound states due to coupling with free particle states is a general phenomenon occurring at energy scales from MeV in nuclear physics to peV in ultracold atomic gases. Such a coupling gives rise to Fano-Feshbach resonances (FFR) that have become key to understanding and controlling interactions-in ultracold atomic gases, but also between quasiparticles, such as microcavity polaritons. Their energy positions were shown to follow quantum chaotic statistics. In contrast, their lifetimes have so far escaped a similarly comprehensive understanding. Here, we show that bound states, despite being resonantly coupled to a scattering state, become protected from decay whenever the relative phase is a multiple of π. We observe this phenomenon by measuring lifetimes spanning four orders of magnitude for FFR of spin-orbit excited molecular ions with merged beam and electrostatic trap experiments. Our results provide a blueprint for identifying naturally long-lived states in a decaying quantum system.

Carer experience of end-of-life service provision: a social network analysis.

OBJECTIVE: To identify the position of formal service providers in the networks of those providing end-of-life care in the home from the perspective of the informal network. METHODS: Using third-generation social network analysis, this study examined the nature and strength of relationships of informal caring networks with formal service providers through individual carer interviews, focus groups of caring networks and outer network interviews. RESULTS: Service providers were usually highly valued for providing services, equipment, pain management and personalised care for the dying person plus support and advice to the principal carer about both caring tasks and negotiating the health system. However, formal service providers were positioned as marginal in the caring network. Analysis of the relative density of relationships within networks showed that whereas relationships among family and friends had similar density, relationships between service providers and family or friends were significantly lower. CONCLUSION: The results supported the Circles of Care model and mirror the perspective of formal service providers identified in previous research. The research raises questions about how formal and informal networks might be better integrated to increase their effectiveness for supporting in-home care.