Engagement of specialized palliative care services with the general public: A population-level survey in three European countries.

BACKGROUND: There is growing recognition of a need for community capacity development around serious illness, dying and loss, complementary to strategies focussing on health services. Hitherto, little is known about how and to what extent palliative care services in different countries are adopting these ideas in their practices. AIM: To examine views towards and actual involvement in community engagement activities as reported by specialized palliative care services in Belgium, Sweden and the UK. DESIGN, SETTING, PARTICIPANTS: Cross-sectional survey among all eligible specialized palliative care services in Flanders (Belgium) (n = 50), Sweden (n = 129) and the UK (n = 245). Representatives of these services were invited to complete an online questionnaire about their actual activities with the general public and their attitudes regarding such activities. RESULTS: Response rates were 90% (Belgium), 71% (Sweden) and 49% (UK). UK services more often reported engaging with the general public to develop knowledge and skills through a range of activities (80%-90%) compared to Belgian (31%-71%) and Swedish services (19%-38%). Based on a combination of engagement activities 74% of UK services could be labelled as extending their focus beyond the clinical mandate compared to 16% in Belgium and 7% in Sweden. Services' dependency on charitable donations was strongly associated with increased engagement with the general public. CONCLUSION: An expansion of the mandate of specialized palliative care services beyond a traditional clinically-oriented focus towards one inclusive of community capacity building around serious illness, dying and loss is occurring in different countries, albeit to different degrees and with different intensities.

A systematic review of controlled studies of suicidal and self-harming behaviours in adolescents following bereavement by suicide.

BACKGROUND: Research suggests that being exposed to the suicide of others increases risk of subsequent suicidal or self-harming thoughts or behaviours. What is less clear is whether this applies to adolescents, and if the risk exceeds that following other causes of death, which has implications on suicide prevention approaches. This study aimed to systematically review the evidence on adolescent bereavement experiences by different causes to address this gap. METHODS: A comprehensive literature search using four databases (MEDLINE, PsycInfo, Web of Science, and Embase) identified 21 studies which measured suicidal or self-harm outcomes among bereaved adolescents aged between 12 to 18 years old. The literature was screened, data was extracted using pre-piloted forms, and risk of bias was assessed using versions of the Newcastle-Ottawa Scale; a proportion of papers were double extracted and assessed for bias. The review has been registered with PROSPERO (CRD42016051125). RESULTS: A narrative synthesis of the literature demonstrated divergent findings depending on the outcome being measured. Suicide bereavement appears to be strongly associated with suicide mortality among parentally bereaved youth, while self-harm or non-fatal suicide attempts (either presenting to hospital or self-reported) showed mixed evidence. Suicidal ideation was not uniquely associated with suicide bereavement. An exploration of circumstances surrounding the death, characteristics of the person who died, and characteristics of the young person across each outcome measure suggested that earlier experiences of loss, shorter timeframes following the death, and maternal death are associated with particularly elevated risk of suicidal outcomes. CONCLUSIONS: Findings suggest that suicide loss is associated with subsequent suicide, and may be associated with non-fatal self-harm. A detailed account of the risk and protective factors surrounding suicide bereavement among young people is crucial to understand the pathways through which suicidal behaviours develop. Researchers, policy makers and practitioners with an interest in suicide prevention will benefit from clarity around the needs of young bereaved individuals.

Corrigendum: A Theory-Based Longitudinal Investigation Examining Predictors of Self-Harm in Adolescents With and Without Bereavement Experiences.

[This corrects the article DOI: 10.3389/fpsyg.2020.01153.].

The prevalence of childhood bereavement in Scotland and its relationship with disadvantage: the significance of a public health approach to death, dying and bereavement.

BACKGROUND AND METHOD: There is an absence of research on the prevalence of bereavement during early childhood and the relationship between childhood bereavement and socioeconomic status (SES) and this poses a challenge in both understanding and supporting children's bereavement experiences. Using longitudinal data from the Growing Up in Scotland study, which tracks the lives of three nationally representative cohorts of children, this paper aimed to address these gaps in research. It specifically drew on data from Birth Cohort 1 to document the recorded bereavements of 2,815 children who completed all 8 sweeps of data collection, from age 10 months to 10 years. FINDINGS: The study found that 50.8% of all children are bereaved of a parent, sibling, grandparent or other close family member by age 8 and this rises to 62% by age 10. The most common death experienced was that of a grandparent or other close relative. The study also found that children born into the lowest income households are at greater risk of being bereaved of a parent or sibling than those born into the highest income households. DISCUSSION AND CONCLUSION: Given the prevalence of childhood bereavement and its relationship with disadvantage, this paper argues that there is an important need to understand bereavement as a universal issue that is affected by the social conditions in which a child becomes bereaved, as well as an individual experience potentially requiring specialist support. This paper thus seeks to position childhood bereavement more firmly within the public health approach to palliative and bereavement care discourse and contends that doing so provides a unique and comprehensive opportunity to better understand and holistically respond to the experience of bereavement during childhood.

A Theory-Based Longitudinal Investigation Examining Predictors of Self-Harm in Adolescents With and Without Bereavement Experiences.

BACKGROUND: Research has demonstrated that exposure to suicide can lead to increased vulnerability for self-harm or suicide. As a result, ideation-to-action models of suicide (e.g., the Integrated Motivational-Volitional Model of Suicide; IMV) recognise exposure as a significant risk factor which may be implicated in the translation of thoughts into actions. However, few studies have tested this theoretical link explicitly within an adolescent population, and examined how it compares to other types of bereavements. METHODS: A 6-month prospective questionnaire study was conducted with 185 Scottish adolescents aged 11-17 (113 adolescents also completed the questionnaire at follow-up). The questionnaire included measures on experiences with bereavement and lifetime engagement in self-harm, as well as measures of defeat, entrapment, social support, coping, and other psychological variables. RESULTS: At baseline, 12% of young people reported exposure to a suicide death, and 61% to a non-suicide death. In addition, 21% of pupils reported ever engaging in self-harm, while 23% had experienced self-harm ideation without engaging in it. Cross-sectional multivariate logistic regressions showed that family social support, glorifying/normalising beliefs about suicide, and family self-harm were significantly associated with self-harm group membership (control, ideation, or enactment groups). At follow-up, 10% of pupils reported exposure to a suicide death and 16% to a non-suicide death for the first time. A total of 26% of the sample reported self-harm at T2 (11% of participants for the first time), and 24% reported self-harm ideation without engaging in it. Multivariate analyses found that self-harm ideation and family self-harm at baseline were the only variables to predict self-harm group membership prospectively, in the expected directions. Bereavement experiences, whether by suicide or non-suicide, did not predict self-harm group status at baseline nor at follow-up. CONCLUSIONS: This study provides support for the validity of a theoretical model of suicide, even though predictive ability over the 6-months period was limited. Although difficulties with recruitment may have limited the statistical power, this study provides insight into the prevalence and experiences of suicide bereavement among adolescents and the factors related to the onset and maintenance of self-harm.

A normothermic ex vivo organ perfusion delivery method for cardiac transplantation gene therapy.

Clinically, both percutaneous and surgical approaches to deliver viral vectors to the heart either have resulted in therapeutically inadequate levels of transgene expression or have raised safety concerns associated with extra-cardiac delivery. Recent developments in the field of normothermic ex vivo cardiac perfusion storage have now created opportunities to overcome these limitations and safety concerns of cardiac gene therapy. This study examined the feasibility of ex vivo perfusion as an approach to deliver a viral vector to a donor heart during storage and the resulting bio distribution and expression levels of the transgene in the recipient post-transplant. The influence of components (proprietary solution, donor blood, and ex vivo circuitry tubing and oxygenators) of the Organ Care System (OC) (TransMedics, Inc., Andover MA) on viral vector transduction was examined using a cell-based luciferase assay. Our ex vivo perfusion strategy, optimized for efficient Adenoviral vector transduction, was utilized to deliver 5 × 1013 total viral particles of an Adenoviral firefly luciferase vector with a cytomegalovirus (CMV) promotor to porcine donor hearts prior to heterotopic implantation. We have evaluated the overall levels of expression, protein activity, as well as the bio distribution of the firefly luciferase protein in a series of three heart transplants at a five-day post-transplant endpoint. The perfusion solution and the ex vivo circuitry did not influence viral vector transduction, but the serum or plasma fractions of the donor blood significantly inhibited viral vector transduction. Thus, subsequent gene delivery experiments to the explanted porcine heart utilized an autologous blood recovery approach to remove undesired plasma or serum components of the donor blood prior to its placement into the circuit. Enzymatic assessment of luciferase activity in tissues (native heart, allograft, liver etc.) obtained post-transplant day five revealed wide-spread and robust luciferase activity in all regions of the allograft (right and left atria, right and left ventricles, coronary arteries) compared to the native recipient heart. Importantly, luciferase activity in recipient heart, liver, lung, spleen, or psoas muscle was within background levels. Similar to luciferase activity, the luciferase protein expression in the allograft appeared uniform and robust across all areas of the myocardium as well as in the coronary arteries. Importantly, despite high copy number of vector genomic DNA in transplanted heart tissue, there was no evidence of vector DNA in either the recipient's native heart or liver. Overall we demonstrate a simple protocol to achieve substantial, global gene delivery and expression isolated to the cardiac allograft. This introduces a novel method of viral vector delivery that opens the opportunity for biological modification of the allograft prior to implantation that may improve post-transplant outcomes.

Integrating palliative care into the community: the role of hospices and schools.

OBJECTIVES: Palliative care services have, up to now, paid insufficient attention to social aspects of dying and bereavement and this has affected how patients and their families experience end of life and bereavement within their communities. New public health approaches to palliative care offer a different way forward by seeking to develop communities that support death and bereavement. Such approaches are now a priority for the majority of hospices in the UK and work with schools has been identified as a key area of work. Practice that engages schools and children on issues concerning end-of-life care is, however, underdeveloped and underdocumented. This research explored the role of hospices in working with schools to promote education and support around end-of-life and bereavement experiences. METHODS: Action research was used to explore the potential for hospices to work with schools and engage participants in change processes. The research was conducted in 1 hospice and 2 primary schools in Scotland. Participants included children, parents and school and hospice staff. RESULTS: Seven innovations were identified that were found to be useful for the school curriculum and the relationship between hospices, school communities and wider society. A model for integrated practice between hospices and schools is suggested. CONCLUSIONS: This research adds to knowledge about how hospices might engage in community engagement activities that encourage school staff to develop greater openness and support around end-of-life and bereavement care for their children. This will require a rethinking of normal hospice services to also participate in community capacity building.

WA50†We can't do it alone: hospices and schools working together to educate and support children around death, dying and bereavement.

BACKGROUND: Educating and supporting children around death, dying and bereavement, in schools, frequently relies on the individual interest and expertise of staff (Rowling 2003). Moves to develop such work of ten results in one off projects led by external agencies. Support and education is therefore ad hoc and unequitable. A research study was undertaken between a hospice and school to develop practice in this area from a health promotion perspective. This presentation discusses the design and implementation of two practice innovations arising from this process. AIM: The innovations aimed to introduce and educate children on issues related to loss and change, whilst simultaneously ensure that school staff have the skills and confidence to support individual experiences within the school setting. This was from a harm education and early intervention standpoint. METHOD: Collaborative inquiry, within an action research methodology, was used to advance the innovations. This involved school and hospice staff working together to design and facilitate the activities. RESULTS: A programme of activities for children aged 5 to 11 (the resilience project) was designed and integrated throughout the curriculum. This is currently being piloted. A bereavement training programme was designed and facilitated to all school staff. Evaluations reported an increase in confidence around supporting bereavement issues. CONCLUSION: The process highlighted that combing the skills and expertise of hospice and school staff was essential in developing sustainable activities, appropriate to the setting. The role of the hospice in engaging with communities to collaboratively develop education and support around death, dying and bereavement was emphasised. REFERENCE: Rowling, L. Grief in school communities: effective support strategies. Buckingham and Philadelphia: Open University Press, 2003.

Public health approaches to end-of-life care in the UK: an online survey of palliative care services.

AIMS AND OBJECTIVES: The public health approach to end-of-life care has gained recognition over the past decade regarding its contribution to palliative care services. Terms, such as health-promoting palliative care, and compassionate communities, have entered the discourse of palliative care and practice; examples exist in the UK and globally. This scoping study aimed to determine if such initiatives were priorities for hospices in the UK and, if so, provide baseline data on the types of initiatives undertaken. METHODS: An online survey was designed, piloted and emailed to 220 palliative care providers across the four UK countries. It included a total of six questions. Quantitative data were analysed using descriptive statistics. Qualitative data were analysed thematically. FINDINGS: There was a 66% response rate. Of those providers, 60% indicated that public health approaches to death, dying and loss were a current priority for their organisation. Respondents identified a range of work being undertaken currently in this area. The most successful were felt to be working with schools and working directly with local community groups. The findings demonstrate the relevance of a public health approach for palliative care services and how they are currently engaging with the communities they serve. Although the approach was endorsed by the majority of respondents, various challenges were highlighted. These related to the need to balance this against service provision, and the need for more training and resources to support these initiatives, at both national and community levels.