Palliative Care and Social Practice最新文献

{"title":"Experiences of engaging a death doula: qualitative interviews with bereaved family members.","authors":"Deb Rawlings, Kristine Van Dinther, Lauren Miller-Lewis, Jenifer Tieman, Kate Swetenham","doi":"10.1177/26323524231207112","DOIUrl":"10.1177/26323524231207112","url":null,"abstract":"<p><strong>Background: </strong>There has been an emerging trend of adopting a death doula, a non-medical advocate and guide for people at the end of life and their families. While there has been growing empirical research regarding the work of death doulas, no studies have been undertaken with the families who have engaged them.</p><p><strong>Objectives: </strong>To understand the experiences of families who used a death doula in terms of what they did for the patient and family; to understand the benefits and drawbacks of using a death doula; and to use family insight to determine cultural shifts towards death and dying, and what the death doula phenomenon tells us around our attitudes towards death and dying.</p><p><strong>Methods: </strong>We recruited and interviewed 10 bereaved family members to learn about their experiences using a death doula. This qualitative research took an interpretive phenomenological approach, and thematic analysis was used to analyse the data.</p><p><strong>Results: </strong>The most valuable attribute the families gained from death doulas was an increase in death literacy resulting in personal empowerment. Empowerment enabled positive end-of-life experiences for the family and personalised deaths for the patient. A novel finding was that the connections and knowledge shared between the death doula and family had a resonant effect, resulting in families being more comfortable with death and keen to share their knowledge with others. Therefore, family engagement of a death doula led to an increase in community awareness around death and dying.</p><p><strong>Conclusion: </strong>Family members' experience with a death doula was overwhelmingly positive, empowering them practically and emotionally to deliver the best end-of-life care. Empathy and sharing of knowledge by death doulas were valued by families and resulted in an increase in death literacy which provided families with opportunities to 'pay it forward'. Furthermore, the relationships formed between doulas and families have the potential for a lasting, resonant effect.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-11-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10637134/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"89719872","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Conversations on death and dying: exploring performance as a prompt.","authors":"Sheila McCormick","doi":"10.1177/26323524231209059","DOIUrl":"https://doi.org/10.1177/26323524231209059","url":null,"abstract":"<p><strong>Background: </strong>Death is inevitable, yet for some, conversations around death remain difficult. The stigmatisation of death amongst some cultures has a negative impact with studies showing societies least likely to discuss end of life openly remain the lowest ranked in terms of end-of-life care quality. Out of this understanding have come several socially engaged projects (e.g. Death Cafes, The Conversation Project, Before I Die Festivals) developed to encourage engagement with the subject.</p><p><strong>Objective: </strong>In this article I ask, can autobiographical performance prompt conversations on death and dying? To answer the research question, I examine the socially engaged Death, Dinner, and Performance project, and analyse the effectiveness of the performance/dramaturgical methodology developed in the project to encourage participant engagement with the difficult subjects of death and dying.</p><p><strong>Design: </strong>I look specifically at the use of autobiographical performance strategies in the Death, Dinner, and Performance project and explore the outcomes associated with the adaptation of those strategies (particularly regarding relationality in a socially engaged context) in conversations between participants on death, dying and bereavement.</p><p><strong>Method: </strong>The project adopted a mixed methodology that engaged both Practice as Research (PaR) and qualitative research strategies.</p><p><strong>Results: </strong>PaR reflection and analysis, along with qualitative coding of participant responses allowed an inductive, thematic analysis that highlighted several recurring themes. These are analysed and discussed under two categories in the Analysis and results section at the end of this paper: firstly, in relation to recurring themes in the participants' discussion around the subject of death and dying, and secondly, in relation to the socially engaged strategy (commensality and use of autobiographical performance) used to encourage that discussion.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10623634/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"71486950","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The compassionate communities connectors program: effect on healthcare usage.","authors":"Samar M Aoun,&nbsp;Natasha Bear,&nbsp;Bruce Rumbold","doi":"10.1177/26323524231205323","DOIUrl":"https://doi.org/10.1177/26323524231205323","url":null,"abstract":"<p><strong>Background: </strong>Public health approaches to palliative and end-of-life care focus on enhancing the integration of services and providing a comprehensive approach that engages the assets of local communities. However, few studies have evaluated the relative costs and benefits of providing care using these service models.</p><p><strong>Objectives: </strong>To assess the effect on healthcare usage of a community-based palliative care program ('Compassionate Communities Connectors') where practical and social support was delivered by community volunteers to people living with advanced life-limiting illnesses in regional Western Australia.</p><p><strong>Design: </strong>Controlled before-and-after study/Cost-consequence analysis.</p><p><strong>Methods: </strong>A total of 43 community-based patients participated in the program during the period 2020-2022. A comparator population of 172 individuals with advanced life-limiting illnesses was randomly selected from usage data from the same set of health services.</p><p><strong>Results: </strong>Relative to controls, the intervention group had lower hospitalizations per month [Incidence rate ratio (IRR): 0.37; 95% CI: 0.18-0.77, <i>p</i> = 0.007], less hospital days per month (IRR: 0.23; 95% CI: 0.11-0.49, <i>p</i> < 0.001) and less emergency presentations (IRR: 0.56; 95% CI: 0.34-0.94, <i>p</i> = 0.028. The frequency of outpatient contacts overall was two times higher for the intervention group (IRR: 2.07; 95% CI: 1.11-3.86, <i>p</i> = 0.022), indicating the Connector program may have shifted individuals away from the hospital system and toward community-based care. Estimated net savings of $AUD 518,701 would be achieved from adopting the Connector program, assuming enrollment of 100 patients over an average 6-month participation period.</p><p><strong>Conclusion: </strong>This combined healthcare usage and economic analysis of the 'Compassionate Communities Connectors' program demonstrates the benefits of optimizing palliative care services using home-based and community-centered interventions, with gains for the health system through improved patient outcomes and reduced total healthcare costs (including fewer hospitalizations and readmissions). These findings, coupled with the other published results, suggest that investment in the Connectors program has the capacity to reduce net health sector expenditure while also improving outcomes for people with life-limiting illnesses.</p><p><strong>Trial registration: </strong>Australian and New Zealand Clinical Trial Registry: ACTRN12620000326998.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-10-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10612440/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"71414475","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"An agenda to develop Pediatric Palliative care programs to serve children with life-threatening and life-limiting conditions in the Gulf Cooperation Council countries.","authors":"Qutaibah Alotaibi,&nbsp;Harold Siden","doi":"10.1177/26323524231201868","DOIUrl":"https://doi.org/10.1177/26323524231201868","url":null,"abstract":"<p><p>Medical advances have increased the number of children living with life-threatening/life-limiting illnesses worldwide, including in Gulf Cooperation Council (GCC) countries. Pediatric palliative care (PPC) is a relatively young subspecialty that cares for children with life-threatening/life-limiting illnesses and their families. PPC aims to alleviate physical, psychological, and social distress in children with life-threatening/life-limiting illnesses and their families and improve their quality of life. PPC is an essential service that should be implemented in all nations, as it is a human right. Moreover, a core value of PPC services is to alleviate children's suffering, irrespective of cure availability. Hence, the global consensus on palliative services must be universal and include developing countries with limited resources. While PPC services are growing internationally, the GCC countries have yet to implement these valuable services in the region. This work aims to define the local base information important to facilitating the PPC program. We explored and identified the information vital for establishing a successful program, which was then categorized and mapped into subgroups. In doing so, we outline a roadmap to facilitate the smooth introduction of PPC in GCC countries to benefit the lives of children with life-limiting illnesses.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-09-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/40/94/10.1177_26323524231201868.PMC10542219.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41151398","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"'Completely by accident': a qualitative analysis of service providers motivations to practice palliative care.","authors":"Joshua Okyere","doi":"10.1177/26323524231201869","DOIUrl":"https://doi.org/10.1177/26323524231201869","url":null,"abstract":"<p><strong>Background: </strong>The lack of clarity about the factors that motivate service providers to take a career in palliative care presents a significant knowledge gap that must be filled. This is because gaining knowledge about the motivations for taking a career in palliative care would provide valuable insights that can potentially increase buy-in and interest among prospective healthcare professionals. By elucidating the motivations of service providers, the study aims to contribute to the broader field of palliative care research and inform the development of tailored interventions and training programmes to increase the pool of specialized palliative care providers.</p><p><strong>Objective: </strong>To explore palliative care service providers' motivations to practice palliative care.</p><p><strong>Design: </strong>Exploratory descriptive design.</p><p><strong>Methods: </strong>In all, seven in-depth interviews were conducted using a semi-structured interview guide. Data were managed using NVivo-12. Inductive thematic analysis was performed by following Hasse's adaptation of Colaizzi's approach to qualitative thematic analysis.</p><p><strong>Results: </strong>Two main factors motivated service providers to take a career in palliative care. The first was the influence of professional training while the second motivation was from their personal experiences regarding providing care to a family member with palliative care needs.</p><p><strong>Conclusion: </strong>The study concludes that personal experiences with caring for a loved one with palliative care needs play a pivotal role in shaping the decision of service providers to pursue a career in palliative care. Also, investment in palliative care education and training is crucial to ensure a skilled workforce capable of meeting the growing needs of patients and families facing serious illnesses.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-09-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/bc/1a/10.1177_26323524231201869.PMC10515551.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41151389","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Public sentiments and the influence of information-seeking preferences on knowledge, attitudes, death conversation, and receptiveness toward palliative care: results from a nationwide survey in Singapore.","authors":"Su Lin Yeo,&nbsp;Raymond Han Lip Ng,&nbsp;Tan-Ying Peh,&nbsp;May O Lwin,&nbsp;Poh-Heng Chong,&nbsp;Patricia Soek Hui Neo,&nbsp;Jamie Xuelian Zhou,&nbsp;Angel Lee","doi":"10.1177/26323524231196311","DOIUrl":"10.1177/26323524231196311","url":null,"abstract":"<p><strong>Background: </strong>Low awareness about palliative care among the global public and healthcare communities has been frequently cited as a persistent barrier to palliative care acceptance. Given that knowledge shapes attitudes and encourages receptiveness, it is critical to examine factors that influence the motivation to increase knowledge. Health information-seeking from individuals and media has been identified as a key factor, as the process of accessing and interpreting information to enhance knowledge has been shown to positively impact health behaviours.</p><p><strong>Objective: </strong>Our study aimed to uncover public sentiments toward palliative care in Singapore. A conceptual framework was additionally developed to investigate the relationship between information-seeking preferences and knowledge, attitudes, receptiveness of palliative care, and comfort in death discussion.</p><p><strong>Design and methods: </strong>A nationwide survey was conducted in Singapore with 1226 respondents aged 21 years and above. The data were analysed through a series of hierarchical multiple regression to examine the hypothesised role of information-seeking sources as predictors.</p><p><strong>Results: </strong>Our findings revealed that 53% of our participants were aware of palliative care and about 48% were receptive to receiving the care for themselves. It further showed that while information-seeking from individuals and media increases knowledge, attitudes and receptiveness to palliative care, the comfort level in death conversations was found to be positively associated only with individuals, especially healthcare professionals.</p><p><strong>Conclusion: </strong>Our findings highlight the need for public health authorities to recognize people's deep-seated beliefs and superstitions surrounding the concept of mortality. As Asians view death as a taboo topic that is to be avoided at all costs, it is necessary to adopt multipronged communication programs to address those fears. It is only when the larger communicative environment is driven by the media to encourage public discourse, and concurrently supported by timely interventions to trigger crucial conversations on end-of-life issues between individuals, their loved ones, and the healthcare team, can we advance awareness and benefits of palliative care among the public in Singapore.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-09-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/81/3a/10.1177_26323524231196311.PMC10504834.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10286055","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Latino advanced cancer patients' prognostic awareness and familial cultural influences on advance care planning engagement: a qualitative study.","authors":"Normarie Torres Blasco, Lianel Rosario, Megan J Shen","doi":"10.1177/26323524231193038","DOIUrl":"10.1177/26323524231193038","url":null,"abstract":"<p><strong>Background: </strong>Advanced cancer patients need an accurate understanding of their prognoses in order to engage in informed end-of-life care treatment decision-making. Latino cancer patients experience disparities around prognostic understanding, in part due to a lack of culturally competent communication around prognosis and advance care planning (ACP).</p><p><strong>Objective: </strong>The objective of the present study of Latino patients with advanced, terminally ill cancer is to examine their understanding of prognosis, and how cultural factors may influence this understanding and engagement in ACP.</p><p><strong>Methods: </strong>A mixed methods study was conducted, which consisted of surveys and semi-structured interviews. Descriptive statistics were used for sociodemographic information and self-reported prognostic understanding. Interviews around prognostic understanding and cultural influences on this understanding and engagement in ACP were recorded, transcribed, and then coded and analyzed using thematic content analysis.</p><p><strong>Findings: </strong>Latino patients with advanced cancer (<i>n</i> = 20) completed a self-reported survey and participated in a semi-structured interview. Results indicate that among terminally ill patients, 50% of the patients inaccurately believed they had early-stage cancer, 85% did not believe their cancer was terminal, and 70% believed their cancer was curable. Moreover, interviews yielded two main themes: varying levels of awareness of the incurability of their cancer and diverse end-of-life care decision-making and treatment preferences based on prognostic understanding. Within these themes, patients expressed denial or acceptance of their prognosis through communication with the oncologist, the importance of family, and incorporating their pre-existing beliefs.</p><p><strong>Conclusion: </strong>Findings indicate the importance of communication, family involvement, and incorporation of beliefs for promoting an accurate prognostic understanding among Latino patients. It is imperative to address disparities in Latino advanced cancer patients' prognostic understanding so they can engage in informed treatment decision-making around end-of-life care.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-08-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/0c/5a/10.1177_26323524231193038.PMC10472825.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10652370","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Reflecting on choices and responsibility in palliative care in the context of social disadvantage.","authors":"Maddy French, Lorraine Hansford, Tess Moeke-Maxwell","doi":"10.1177/26323524231193037","DOIUrl":"10.1177/26323524231193037","url":null,"abstract":"<p><p>There is a need to understand how to improve palliative care provision for people impacted by social inequity. Social inequity, such as that related to socioeconomic circumstances, has profound impacts on experiences of death and dying, posing personal and professional challenges for frontline professionals tasked to ensure that everyone receives the best standard of care at the end of their lives. Recent research has highlighted an urgent need to find ways of supporting healthcare professionals to acknowledge and unpack some of the challenges experienced when trying to deliver equitable palliative care. For example, those involved in patient or person-centred activities within health settings often feel comfortable focusing on individual choice and responsibility. This can become ethically problematic when considering that inequities experienced towards the end of life are produced and constrained by socio-structural forces beyond one individual's control. Ideas and theories originating outside palliative care, including work on structural injustice, cultural safety and capabilities approach, offer an alternative lens through which to consider roles and responsibilities for attending to inequities experienced at the end of life. This paper draws upon these ideas to offer a new way of framing individual responsibility, agency and collective action that may help palliative care professionals to support patients nearing their end of life, and their families, in the context of socioeconomic disadvantage. In this paper, we argue that, ultimately, for action on inequity in palliative care to be effective, it must be coherent with how people understand the production of, and responsibility for, those inequities, something that there is limited understanding of within palliative care.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2023-08-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10467305/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10509999","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A bad time to die? Exploring bereaved families/wha-nau experiences of end-of-life care under COVID-19 restrictions: a qualitative interview study.","authors":"Tessa Morgan, Merryn Gott, Lisa Williams, Joe Naden, Yingmin Wang, Brianna Smith, Elizabeth Fanueli, Martyarini Budi Setyawati, Kathryn Morgan, Jackie Robinson, Natalie Anderson, Melissa Carey, Tess Moeke-Maxwell","doi":"10.1177/26323524231189525","DOIUrl":"10.1177/26323524231189525","url":null,"abstract":"<p><strong>Background: </strong>There have been international concerns raised that, during the COVID-19 pandemic, there was an absence of good palliative care resulting in poor end-of-life care experiences. To date, there have been few studies considering the pandemic's impact on people dying from non-COVID-19 causes and their families and friends. In particular, there has been very less empirical research in relation to end-of-life care for Indigenous, migrant and minoritised ethnic communities.</p><p><strong>Objectives: </strong>To explore bereaved next-of-kin's views and experiences of end-of-life care under COVID-19 pandemic regulations.</p><p><strong>Design: </strong>This qualitative study involved in-depth one-off interviews with 30 ethnically diverse next-of-kin who had a family member die in the first year of the pandemic in Aotearoa, New Zealand.</p><p><strong>Methods: </strong>Interviews were conducted by ethnically matched interviewers/interviewees. A reflexive thematic analysis was used to explore and conceptualise their accounts.</p><p><strong>Results: </strong>A key finding was that dying alone and contracting COVID-19 were seen as equally significant risks by bereaved families. Through this analysis, we identified five key themes: (1) compromised connection; (2) uncertain communication; (3) cultural safety; (4) supported grieving and (5) silver linings.</p><p><strong>Conclusion: </strong>This article emphasises the importance of enabling safe and supported access for family/whanau to be with their family/wha-nau member at end-of-life. We identify a need for wider provision of bereavement support. We recommend that policy makers increase resourcing of palliative care services to ensure that patients and their families receive high-quality end-of-life care, both during and post this pandemic. Policy makers could also promote a culturally-diverse end-of-life care work force and the embedding of culturally-safety practices across a range of institutions where people die.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2023-08-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/92/21/10.1177_26323524231189525.PMC10424543.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10305517","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Civic Engagement in Neighbourhoods regarding serious illness, death and loss (CEIN): a study protocol for a convergent-parallel mixed-methods process and outcome evaluation that balances control and flexibility.","authors":"Louise D'Eer, Kenneth Chambaere, Lieve Van den Block, Sarah Dury, Luc Deliens, Joachim Cohen, Tinne Smets","doi":"10.1177/26323524231168417","DOIUrl":"10.1177/26323524231168417","url":null,"abstract":"<p><strong>Background: </strong>New public health approaches in palliative care attribute an active role to civic society in providing care for those who are seriously ill, caring, or bereaved. Accordingly, Civic Engagement In Neighbourhoods regarding serious illness, dying and loss (CEIN) are emerging worldwide. However, study protocols that advise on how to evaluate the impact and complex social change processes underlying these civic engagement initiatives are lacking.</p><p><strong>Objectives: </strong>The main objective of this study is to describe the study protocol for the evaluation of civic engagement initiatives in serious illness, dying, and loss in two neighbourhoods in Flanders, Belgium.</p><p><strong>Design: </strong>A convergent-parallel mixed-method process and outcome evaluation for the CEIN study.</p><p><strong>Methods & analysis: </strong>We look at the evaluation of CEIN through a critical realist lens, thereby including the social, political, and economic determinants of social change in CEIN, the mechanisms to achieve this social change, the outcomes, and the mutual connection between these three aspects. We will conduct a convergent-parallel mixed-method process and outcome evaluation in which qualitative (i.e. observations, interviews, group discussions, and ego network mapping) and quantitative data (i.e. a pre-post survey) are simultaneously but separately collected and analysed and in the last stage combined by narrative synthesis.</p><p><strong>Discussion: </strong>This protocol illustrates the difficulty of operationalising the desired long-term impact of social changes regarding serious illness, dying, and loss into more manageable outcomes. We recommend a well-cogitated logic model that connects the outcomes of the study to its potential actions. Applying this protocol in practice is a constant exercise between providing sufficient flexibility to meet feasibility, desirability, and context-specific needs in the CEIN study and providing sufficient guidelines to structure and control the evaluation process.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2023-04-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/4c/51/10.1177_26323524231168417.PMC10150425.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9779288","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}