We are not alone: international learning for professionals caring for children requiring palliative care.

BACKGROUND: Educational opportunities for professionals working with children requiring palliative care are central to future development within the specialty across countries. International educational initiatives involving a range of professionals are important for learning with and from others working within the field. AIM: To explore the experiences and value to students from participating in an international online discussion forum. METHOD: This article examines one such initiative; the use of an international asynchronous discussion forum with students in Melbourne, Australia and Belfast, UK who work with children and families. The innovation is examined and student perspectives of the forum's value are presented. RESULTS: Students endorsed the value of the forum, identifying three main areas of learning: differences across locations within countries, respecting different views and being open, and need for continued learning within children's palliative care. The overarching theme 'we are not alone' supported the idea that participation in the international discussion forum enabled students to see a broader perspective. Ideas for future developments of similar forums are also explored.

Establishing a nurse practitioner collaborative: evolution, development, and outcomes.

The first Australian palliative care nurse practitioner (NP) was endorsed in 2003. In 2009 the Victoria Department of Health funded the development of the Victorian Palliative Care Nurse Practitioner Collaborative (VPCNPC). Its aim was to promote the NP role, develop resources, and provide education and mentorship to NPs, nurse practitioner candidates (NPCs), and health service managers. Four key objectives were developed: identify the demographic profile of palliative care NPCs in Victoria; develop an education curriculum and practical resources to support the training and education of palliative care NPCs and NPs; provide mentorship to NPs, NPCs, and service managers; and ensure effective communication with all key stakeholders. An NPC survey was also conducted to explore NPC demographics, models of care, the hours of study required for the role, the mentoring process, and education needs. This paper reports on the establishment of the VPCNPC, the steps taken to achieve its objectives, and the results of the survey. The NP role in palliative care in Australia continues to evolve, and the VPCNPC provides a structure and resources to clearly articulate the benefits of the role to nursing and clinical services.

Effectiveness of using clinical guidelines for conducting palliative care family meetings in Japan.

PURPOSE: The purpose of this study is to pilot test the effectiveness of using recently developed clinical guidelines from Australia for conducting palliative care family meetings in Japan. METHODS: Palliative care family meetings were conducted using clinical guidelines with 15 primary family carers of cancer patients who were admitted to an acute care hospital in Japan. Using the pre-family meeting questionnaire, the primary carers were asked to write key concerns to discuss during the family meetings and rate their concerns via a numerical rating scale: how upset/worried they were about the problem, frequency in which problem occurs, life interference with the problem, and the confidence to deal with the problem. Within 3 days after the meeting, the primary carers were asked to complete the post-meeting questionnaire to evaluate the effectiveness of the family meeting. RESULTS: There was a significant improvement in family carers' psychological well-being in the post-meeting questionnaires compared to the pre-meeting questionnaires as follows: how upset/worried they were about the problem, t(14) = 3.1071, p < 0.000011; frequency in which problem occurs, t(14) = 3.2857, p < 0.000013; life interference with the problem, t(14) = 2.7857, p < 0.000008; and the confidence to deal with the problem, t(13) = -2.3007, p < 0.005480. CONCLUSIONS: In accordance with the study aims, we were able to demonstrate the utility of a questionnaire as an essential tool to plan and conduct effective communication between health professionals and primary family carers in Japanese cancer patients. This pilot test should be followed up with a larger sample and a controlled trial.

A national pilot of donation after circulatory death (DCD) heart transplantation within the United Kingdom.

BACKGROUND: The United Kingdom (UK) was one of the first countries to pioneer heart transplantation from donation after circulatory death (DCD) donors. To facilitate equity of access to DCD hearts by all UK heart transplant centers and expand the retrieval zone nationwide, a Joint Innovation Fund (JIF) pilot was provided by NHS Blood and Transplant (NHSBT) and NHS England (NHSE). The activity and outcomes of this national DCD heart pilot program are reported. METHODS: This is a national multi-center, retrospective cohort study examining early outcomes of DCD heart transplants performed across 7 heart transplant centers, adult and pediatric, throughout the UK. Hearts were retrieved using the direct procurement and perfusion (DPP) technique by 3 specialist retrieval teams trained in ex-situ normothermic machine perfusion. Outcomes were compared against DCD heart transplants before the national pilot era and against contemporaneous donation after brain death (DBD) heart transplants, and analyzed using Kaplan-Meier analysis, chi-square test, and Wilcoxon's rank-sum. RESULTS: From September 7, 2020 to February 28, 2022, 215 potential DCD hearts were offered of which 98 (46%) were accepted and attended. There were 77 potential donors (36%) which proceeded to death within 2 hours, with 57 (27%) donor hearts successfully retrieved and perfused ex situ and 50 (23%) DCD hearts going on to be transplanted. During this same period, 179 DBD hearts were transplanted. Overall, there was no difference in the 30-day survival rate between DCD and DBD (94% vs 93%) or 90 day survival (90% vs 90%) respectively. There was a higher rate of ECMO use post-DCD heart transplants compared to DBD (40% vs 16%, p = 0.0006), and DCD hearts in the pre pilot era, (17%, p = 0.002). There was no difference in length of ICU stay (9 DCD vs 8 days DBD, p = 0.13) nor hospital stay (28 DCD vs 27 DBD days, p = 0.46). CONCLUSION: During this pilot study, 3 specialist retrieval teams were able to retrieve DCD hearts nationally for all 7 UK heart transplant centers. DCD donors increased overall heart transplantation in the UK by 28% with equivalent early posttransplant survival compared with DBD donors.

Relationship Between Pain and Sedentary Behavior in Rheumatoid Arthritis Patients: A Cross-Sectional Study.

OBJECTIVE: Despite the known benefits of physical activity, high numbers of individuals with rheumatoid arthritis (RA) remain physically inactive and sedentary. Little is known about the determinants of sedentary behavior (SB) in RA. This cross-sectional study was undertaken to examine a range of pain characteristics and RA-related symptoms and their relationship with objectively measured SB. METHODS: In total, 76 adults with RA wore an activPAL4 accelerometer (PAL Technologies) over a 7-day period. Pain characteristics (pain intensity, painful joint count, nonarticular pain), fatigue, sleep, depression, anxiety, and disease activity were assessed. Analyses were first conducted to evaluate correlations with sedentary time. The independent contribution of pain characteristics to variation in SB was analyzed with multivariable linear regression (adjusted for demographic data and disease activity). RESULTS: Participants with valid accelerometer data (n = 72) spent a mean ± SD of 533.7 ± 100.1 minutes/day in SB. Positive associations with daily SB were found for pain intensity (r = 0.31, P < 0.01) and number of painful joints (r = 0.24, P < 0.05) but not nonarticular pain. In multivariable analyses, pain characteristics were not independently associated with SB. Analyses indicated that disease activity had an indirect association with SB mediated by pain intensity. Other correlates of daily SB included anxiety and depression but not fatigue or sleep. CONCLUSION: Results suggest that while pain and other RA-related factors do play a role in SB, they do not appear to have a significant influence after accounting for other variables. Future research should investigate SB and the role of factors unrelated to the symptoms of RA.

Family meetings in palliative care: Multidisciplinary clinical practice guidelines.

BACKGROUND: Support for family carers is a core function of palliative care. Family meetings are commonly recommended as a useful way for health care professionals to convey information, discuss goals of care and plan care strategies with patients and family carers. Yet it seems there is insufficient research to demonstrate the utlility of family meetings or the best way to conduct them. This study sought to develop multidisciplinary clinical practice guidelines for conducting family meetings in the specialist palliative care setting based on available evidence and consensus based expert opinion. METHODS: The guidelines were developed via the following methods: (1) A literature review; (2) Conceptual framework; (3) Refinement of the guidelines based on feedback from an expert panel and focus groups with multidisciplinary specialists from three palliative care units and three major teaching hospitals in Melbourne, Australia. RESULTS: The literature review revealed that no comprehensive exploration of the conduct and utility of family meetings in the specialist palliative care setting has occurred. Preliminary clinical guidelines were developed by the research team, based on relevant literature and a conceptual framework informed by: single session therapy, principles of therapeutic communication and models of coping and family consultation. A multidisciplinary expert panel refined the content of the guidelines and the applicability of the guidelines was then assessed via two focus groups of multidisciplinary palliative care specialists. The complete version of the guidelines is presented. CONCLUSION: Family meetings provide an opportunity to enhance the quality of care provided to palliative care patients and their family carers. The clinical guidelines developed from this study offer a framework for preparing, conducting and evaluating family meetings. Future research and clinical implications are outlined.

Officer attitudes towards adult male prisoners who self-harm: development of an attitudinal measure and investigation of sex differences.

PURPOSE: The aim of the current study was to explore attitudes towards self-harm in a sample of prison officers, with subsidiary aims of assessing if these attitudes alter as a function of the prisoner's behavior and the sex of the participant. METHOD: One hundred and sixty-two officers (100 men and 62 women) completed a general measure of their attitudes towards prisoners and one designed to assess Attitudes towards Prisoners who Self-Harm (APSH). Participants rated their perceptions of two adult male prisoners depicted in vignettes. The vignettes depicted identical types of self-harm but varied the behavioral characteristics of the prisoners involved, with one depicted as "well-behaved" and the other as "disruptive". RESULTS: Women were more likely than men to report positive attitudes towards self-harm and in particular were less likely than men to endorse negative myths regarding self-harm. The prisoner depicted as "disruptive" invoked increased negative attitudes than the "well-behaved" prisoner. This finding was consistent across sex. CONCLUSION: The current study indicates that APSH are comprised of a number of components that were influenced by the sex of the participant and the behavioral characteristics of the prisoners depicted. The implications of these findings to practice are discussed.

Assessment of Ohio's adult and pediatric legislatively mandated prehospital trauma triage criteria.

BACKGROUND: The study objective was to validate prehospital indicators mandated by the Ohio legislature. METHOD: The design was a retrospective case review using adult and pediatric tools developed to assess prehospital documentation of anatomic and physiologic indicators of significant trauma. RESULTS: There were 400 adult records with Glasgow Coma Score, the most frequently cited (23.5%). Fifty-four percent of the adult cases had at least 1 item checked. There were 104 pediatric cases reviewed, where 49% of the cases had at least 1 indicator checked. CONCLUSIONS: The mandated trauma indicators appear to be valid measures for use in trauma research.

Diabetes management in patients receiving palliative care.

A literature review revealed no evidence-based guidelines specific to managing diabetes in the context of palliative care. The purpose of the current project was to describe the management practices of doctors and nurses caring for people with diabetes and advanced disease. Palliative care doctors, palliative care nurses, endocrinologists, and diabetes nurse educators participated in this study. A two-phase project was undertaken: 1) two focus groups, and 2) a cross-sectional survey using a self-completed questionnaire. The focus group and questionnaire data identified that doctors and nurses used a range of practices and blood glucose testing frequencies to control blood glucose based on experience and not according to a robust evidence base. Implications for practice include the importance of collaboration between diabetes and palliative care specialists, and the need to develop clinical management guidelines.

Spousal experiences of coping with and adapting to caregiving for a partner who has a stroke: a meta-synthesis of qualitative research.

PURPOSE: This meta-synthesis was conducted to explore qualitative spousal accounts of coping and adaptation to caregiving when their partner experienced a stroke. METHOD: Electronic databases were searched systematically and inclusion and exclusion criteria were applied. The meta-synthesis was conducted using guidance from Sandelowski and Barroso to extract salient data relating to coping and adaptation. RESULTS: Twelve papers were identified for inclusion and seven themes resultant themes were extracted: Seeking information; Searching for own space and well-being; Suffering in silence; Putting one's own needs aside; Adapting to a changed role; Social support and Hope and Optimism: instilling a positive focus. CONCLUSIONS: The findings suggested spouses adopt a range of adaptive coping strategies although several barriers to these were also identified and discussed in relation to a number of clinical implications. The limitations of this meta-synthesis were discussed, together with recommendations for future research.

The experience of couples when one partner has a stroke at a young age: an interpretative phenomenological analysis.

PURPOSE: Stroke is a major cause of disability worldwide and affects a significant number of working age adults each year. The consequences of stroke impact upon both young stroke survivors and their partners and this study aimed to qualitatively explore their joint experience. METHODS: Eight joint semi-structured interviews were conducted and analysed using IPA. RESULTS: Three themes were identified: (1) "How's this happened?"--Making sense of the stroke; (2) "Is this what life is going to be like now?"--From partners to carer and "cared for"; (3) "I lost being a man. I was a little boy, being looked after all the time"--From partners to parent and child. CONCLUSIONS: Stroke at a young age can significantly disrupt couples' life biographies. The findings highlight the need for both partners to adapt to their reciprocal relationship role changes and the importance of addressing the couple as a focus for intervention. Implications for Rehabilitation Stroke at a young age is an abrupt event that impacts upon both partners in a relationship. The findings add insight to some of the issues faced by young stroke survivors and their partners, which can now be considered in tailoring treatment to this specific cohort within the context of services predominated by older adults. The findings highlight significant relationship role changes experienced within couples, which suggests a need for rehabilitation interventions to focus on the adjustment of both partners.

Supporting family caregivers of hospitalised palliative care patients: a psychoeducational group intervention.

BACKGROUND: Many family caregivers of palliative care patients experience poor health and have other unmet needs, requiring health professionals' support. However, there are few evidence-based supportive interventions to address these issues. PURPOSE: The purpose of this project was to undertake preliminary testing of a psychoeducational group education programme, delivered in an in-patient setting, designed to prepare family caregivers for the role of supporting a relative currently receiving hospital-based palliative care. METHODS: A pilot phase was conducted to develop the intervention and explore its utility. Thereafter the single session intervention was delivered in five palliative care units in three states of Australia and its effectiveness was examined using a pre-post design. Outcome variables included caregiver preparedness, competence and unmet needs. Psychological wellbeing was measured in order to determine if there were any deleterious psychological outcomes. RESULTS: One hundred and twenty-six participants completed Time 1 data and 107 (84.9%) completed Time 2 data (post-intervention). There were statistically significant improvements in caregivers' sense of preparedness (p=<.001; effect size (ES) 0.43) and a significant reduction in unmet caregiver needs (p=014; ES 0.22). There was no significant effect on psychological wellbeing and the improvement on competence fell short of statistical significance. CONCLUSIONS: This study reinforces the notion that psychoeducational interventions for this population can potentially be applicable, acceptable and effective. However, the number of participants who were recruited and attended each session was fewer than anticipated, resulting in methodological implications. It is recommended that the intervention undergo further empirical inquiry, such as via a controlled trial.

Psycho-educational group intervention for family caregivers of hospitalized palliative care patients: pilot study.

BACKGROUND: Family caregivers of patients requiring palliative care commonly experience physical, social, and psychological burdens. Although family caregivers are acknowledged as valid service recipients of palliative care, many have unmet needs, and systematic reviews have shown there are limited evidence-based supportive interventions. OBJECTIVES: This study aimed to develop and pilot test a psycho-educational group education program delivered in the inpatient specialist palliative care setting and designed to prepare primary family caregivers for the role of supporting a relative receiving hospital-based palliative care. METHODS: (1) Development of education session and delivery protocol by the research team and expert panel; (2) pilot the intervention in three clinical sites (five sessions in total); (3) evaluate its accessibility and acceptability; and (4) preliminary testing of outcome measures used to access the intervention's effectiveness. RESULTS AND CONCLUSION: The results revealed that the intervention was appropriate and acceptable to caregivers. The intervention needs to be tested in a larger sample to determine the potential benefits for caregivers' sense of preparedness and competence, and testing needs to ascertain if the intervention is accessible.

Teaching family carers about home-based palliative care: final results from a group education program.

Without the considerable support provided by family carers, many patients receiving palliative care would be unable to remain at home. However, family carers typically lack the required information and skills to prepare them for such a role. Pilot work has demonstrated that group education programs for family carers can be readily developed; they are feasible, accessible, and useful. This project sought to build on our pilot research to further examine the effectiveness of a group education program by evaluating the outcomes with a larger number of participants. The program aimed to prepare primary family carers for the role of supporting a relative with advanced, noncurative cancer at home. The psycho-educational program consisted of three consecutive weekly sessions presented in a group format, conducted at six home-based palliative care services across metropolitan and regional Victoria, Australia. The following dependent variables were measured at three time points: carer competence, preparedness, rewards, and information needs. The three time points were: commencement of the program (Time 1), upon completion (Time 2), and two weeks later (Time 3). A total of 156 participants (including the pilot phase) completed Time 1 questionnaires and 96 completed all three time periods (62%). Between Time 1 and Time 2, the intervention had a statistically significant positive effect on preparedness, competence, rewards, and having informational needs met. Outcomes were maintained at Time 3. There was no difference in the effectiveness of the intervention for participants in regional areas compared to participants in metropolitan areas. This study demonstrated that a group education program to prepare family carers for the role of supporting a dying relative at home was effective. Implications for further research and practice are outlined.

"Palliative care: the essentials": evaluation of a multidisciplinary education program.

BACKGROUND: Despite the world-wide growth of specialist palliative care services, the bulk of care and decision making at the end of life are delivered in general hospital, primary care, and aged care settings. Health workers of all disciplines therefore need to develop attitudes, knowledge, and skills required to deliver palliative care. AIM: To develop, deliver, and evaluate a short multidisciplinary education program focusing on the core elements of palliative care. METHOD: A 2-day program was developed by an expert panel comprising academics, policy makers, clinicians, and a caregiver representative. Evaluation consisted of a pretest/posttest questionnaire aimed at identifying participants' palliative care knowledge and confidence at three time points; prior to attending the program, at the conclusion of the program, and 1 month later. In addition a session evaluation questionnaire sought to determine whether the session was interesting, informative, and useful. RESULTS: The program was delivered four times in both metropolitan and regional areas of Australia to a total of 537 participants incorporating a range of disciplines and care settings. Participants reported significant improvement in key areas including; ability to identify patients likely to benefit from a palliative approach, communication skills, symptom management, family-centered care, legal and ethical issues, and grief and bereavement. CONCLUSIONS: The majority of participants identified that the program increased their levels of interest, knowledge, and confidence in relation to palliative care. The findings demonstrate that multidisciplinary educational approaches of this type can be effective in the context of delivering palliative care education. The high demand to attend the program suggests the need for ongoing palliative care educational activities.