Provision Of Support Research Articles

Documenting and responding to the views and experiences of autistic people with profound learning disabilities: community and professional perspectives on current day-service practices

Purpose This paper details research that aimed to explore how day services and their staff document and respond to the views and experiences of autistic people with profound learning disabilities. Design/methodology/approach This was a qualitative study involving eight interviews, seven workshops and a focus group with day-service staff, people with learning disabilities, autistic people and family members (44 participants). Findings This study found that day-service documenting practices focus on formal aspects of service members’ lives, such as behaviour, as opposed to their views or experiences. Support staff reported that they often gain a complex understanding of members’ views and experiences, but this understanding is not drawn upon when services make decisions about support. This study suggested including members’ views and experiences in documenting practices could improve how they are responded to in and out of service provision, though this required greater recognition of the understanding developed between them and their support workers. Originality/value This paper contributes knowledge of how the views and experiences of a significantly marginalised group, autistic people with profound learning disabilities, can be better represented within support provision and social care, with practical suggestions regarding how this could be realised.

Parametric insurance for climate adaptation in fisheries and aquaculture

Abstract Ensuring resilience and adaptability of the seafood sector in the face of accelerating climate change involves risk management and risk reduction. In a world where climate patterns are rapidly evolving, innovative financial instruments have a role to play in managing environmental risks and reducing exposure to these risks through climate adaptation. Here, we consider the application of parametric insurance—when a predetermined amount is paid out based on parameters chosen based on expected losses associated with extreme events. We offer insights into its utility, implementation, and limitations. We emphasise the role of ocean forecasting in developing and pricing parametric insurance products to help mitigate and adapt to climate-related risks in aquaculture and fisheries. Forecasting is essential for anticipating changing environmental conditions at a range of spatial and temporal scales and thus informing decision-making regarding resource allocation and adaptation strategies. Through both climate-aware insurance policy design and the provision of education, capacity-building programs, and financial support for industry transition, parametric insurance has the potential to help seafood producers navigate the challenges posed by climate change. Use of parametric insurance can facilitate a managed retreat from vulnerable or non-viable areas to more sustainable alternatives or livelihoods by reducing climate risk in a measured environment. This approach can also contribute to the long-term resilience of seafood industries and coastal communities while protecting the health of marine ecosystems.

Building Connections and Striving to Build Better Futures: A Qualitative Interview Study of Alcohol Recovery Navigators’ Practice in the North East of England, UK

To address the holistic and continuity of care needs of people who attend North East hospitals frequently for alcohol-related reasons, Recovery Navigator (Navigator) roles were introduced into Alcohol Care Teams in six hospitals in the North East of England, UK, in 2022. The Navigators aimed to provide dedicated holistic support to patients experiencing alcohol harms, starting whilst in the hospital with the potential to continue this beyond discharge. This qualitative study explores the contributions that the Navigators make towards integrated alcohol care. Twenty-five semi-structured interviews were undertaken with 7 patients, 1 carer, and 17 staff. We used reflexive thematic analysis and applied the concept of continuity of care and Self-Determination Theory. The findings suggest that all of the participants value Navigators having dedicated time to work with patients to address their social needs, that patients benefit from having someone who provides relational support and is ‘gently persistent’, and that most of the Navigators have good relationships with community providers and have supported the transition of patients to these services. Staff recognise the challenges of holistic alcohol care in hospitals, and the support of the Alcohol Care Teams and Navigators is seen as invaluable. Navigators help to address gaps in the provision of holistic support for patients who experience significant health inequalities.

Improving care experiences for premenstrual symptoms and disorders in the United Kingdom (UK): a mixed-methods approach

BackgroundPoor care experiences are reported for premenstrual disorders, which may result in negative outcomes such as distress, reduced healthcare engagement, and delays to diagnosis. This research aimed to explore healthcare experiences for premenstrual symptoms in the United Kingdom and identify areas for potential improvements based on participant responses.MethodAn online survey was delivered, with participants recruited via social media. Experiences of care were explored using quantitative and qualitative questions. Quantitative data were explored using descriptive statistics, with group differences investigated using Mann–Whitney U tests and chi-square tests as appropriate. Qualitative data regarding care improvements was explored using inductive thematic analysis.ResultsThe sample included 339 participants who completed at least 97% of the survey, reported premenstrual symptoms in consecutive cycles, and had sought formal help for these symptoms. Mean age was 34.66 (SD = 5.88), with the majority identifying as women (n = 332, 97.94%) and white/Caucasian (n = 311, 91.74%). 75.22% (n = 255) felt that care was poor. 44.25% (n = 150) felt their symptoms were not taken seriously. 37.76% perceived a lack of healthcare professional knowledge (n = 128). The majority did not receive recommendations of non-formal sources of help (i.e., websites, support groups; 84.96%, n = 288) or lifestyle changes (74.63%, n = 253). Better care experiences were associated with healthcare professionals taking symptoms seriously (U = 1383.00, p < .001), higher perceived healthcare professional knowledge (U = 1370.50, p < .001), and receiving recommendations of non-formal sources of help (X2 = 48.251, df = 1, p < .001, Φc = .382) or lifestyle changes (X2 = 7.849, df = 1, p = .005, Φc = .152). Thematic analysis revealed 8 aspects of care improvement: Empathetic care provision; Healthcare professional education, understanding, and research; Comprehensive symptom assessment and investigations; Diagnosis; Professional support and treatment provision; Signposting or referral to additional resources or sources of help; Wider healthcare system improvements; and Patient role/voice and preferences.ConclusionsPoor care experiences for premenstrual symptoms in the UK are characterised by dismissive attitudes and perceived lack of knowledge. Improved training provision for healthcare professionals is required to address this and other aspects of care identified by qualitative analysis. However, research is needed to identify appropriate methods to deliver training. Utilisation of standardised screening tools and patient-centred communication will likely ensure comprehensive assessments and reduce self-advocacy burdens.

Patient Experiences of Receiving Stroke Discharge Information in Accordance With Preferences.

To examine survivors' experiences of discharge information including risk communication after hospitalisation for a stroke and the characteristics associated with receiving information in accordance with their preferences. With advances in acute stroke care and an ageing population, the number of survivors of stroke is increasing. It is important that healthcare providers ensure patients have adequate information after a stroke-related hospitalisation. Cross-sectional study. Adults recently discharged after a stroke from eight Australian hospitals were mailed a survey. Items examined risk and discharge care information, with participants asked to indicate both their preferences for and receipt of the information. Concordance with preferences was calculated, and characteristics associated with information preference concordance were assessed with binomial logistic regression. Study reported in accordance with STROBE Checklist. Of 1161 eligible patients invited, 403 (35%) completed the survey. All items were endorsed by 80% or more of respondents as being wanted. However, for all items, fewer respondents reported the care as received. Only 28% of participants received information on all five items according to their preferences. Hospital site, Body Mass Index and age were statistically significantly associated with participants receiving information in accordance with their preferences. Most participants indicated a preference to receive recommended discharge information. Findings suggest that patients may benefit from increased information provision prior to hospital discharge after stroke. Nurses have an important role in the provision of stroke care and information. The findings of this study may be used to improve the provision of post-hospital discharge care and support for survivors of stroke, and assist in identifying patients at lower odds of experiencing information aligned with their preferences and who may benefit from support. Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) checklist for cross-sectional studies. No patient or public contribution.

The Interplay Between Stigma and Asian Cultural Values in People with Parkinson's Disease and Their Caregivers.

Parkinson's Disease (PD), the second most prevalent neurodegenerative disorder globally, often carries stigma for those affected; however, stigma's impact on PD caregivers is not well understood. This study investigates PD stigma and its interplay with cultural values, as well as explores the role of depressive symptomatology in shaping help-seeking attitudes among individuals with PD and the provision of support by PD caregivers. Using cross-sectional data collected from people living with PD and their caregivers, this study examines how adherence to Asian values influences the link between self-stigma and help-seeking tendencies in PD patients, as well as how affiliate stigma is linked to caregivers' willingness to help. Further, the mediational role of depression was explored. Among Chinese Parkinson's Disease (PD) patients, stronger adherence to Asian values heightens the negative effect of self-stigma on help-seeking from both professional and non-professional sources, with this process mediated by levels of depression. Similarly, caregivers exhibit the influence of affiliate stigma on help provision, which is accentuated by a higher adherence to Asian values; however, depression was not found to be a significant mediator in this context. This study underscores the need for culturally sensitive interventions tailored to Asian PD-affected families, highlighting its significance in both patient and caregiver contexts.

The Influence of Attributions, Emotions, and Sexual Health Knowledge on Support Provision to Friends with Sexual Health Uncertainties

ABSTRACT When experiencing sexual health uncertainties, emerging adults often rely on friends for support; however, the support provided is not always helpful. This study situates support in response to uncertainty within appraisal and attribution theories to explain nurturant, informational, and tangible support provision. Study 1 coded 441 participants’ responses to open-ended questions about a recent conversation about a friend’s sexual health uncertainty. It revealed that stability and responsibility attributions were made, and fear was the most common emotion described. Desire to provide support and knowledge also were prominent themes. Study 2’s online survey of 248 emerging adults indicated that the more support providers assigned blame for the sexual health uncertainty to the friend, the more fear support providers experienced, yet the more fear experienced, the more nurturant, informational, and tangible support they provided. Perceived sexual health knowledge diminished the association between blame attributions and support provision.

THE ROLE OF MANAGED CARE IN HOME- AND COMMUNITY-BASED SERVICES SPENDING

Abstract The provision and management of Medicaid-financed long-term services and supports (LTSS) has changed dramatically over the last 25 years, including a substantial expansion of both home and community-based services (HCBS) and managed care programs. However, evidence on the costs of these services and drivers of costs is limited. The objective of this study is to describe LTSS and HCBS spending across states, over time, and to examine the impact of managed care on spending. We used a difference-in-difference approach, accounting for the staggered timing of managed care implementation, to analyze data from annual Medicaid LTSS reports and think tank reports from the year 2000 and onward. We find that, after adjusting for inflation, national LTSS spending increased from approximately $410 per capita in 2000 to $570 per capita in 2021; HCBS spending more than tripled during this period. Nineteen states introduced managed care into their LTSS programs between 2000 and 2021 (seven states had implemented programs prior to 2000). States that used managed care to provide some of their Medicaid LTSS demonstrated lower overall LTSS spending post-implementation, but no differences were observed in HCBS spending. However, uncertain fidelity of the data, particularly among states implementing managed LTSS programs, leads to questions of whether these differential trends are due to differences in reporting or changes in the efficiency of care delivery. Our findings highlight the need for increased accuracy and transparency in spending data to facilitate studies that will produce the evidence base for state and federal Medicaid policy makers.

Household Justice Management in Views of Polygamy Practitioners: A Key Principle for Familial Stability and Harmony in Islamic Education

Polygamy is a social system prescribed by Allah to ensure social justice, protect women, and promote familial solidarity. However, the success of this system heavily relies on the husband's commitment to justice, which is an essential and fundamental requirement. Field studies indicate that the justice mandated by Islamic law encompasses the provision of sufficient financial support, including food, clothing, and housing for all wives equally, in addition to equitable distribution of time for overnight stays. Interviews conducted with some polygamy practitioners revealed that failure to uphold justice often leads to conflicts within the family, sometimes resulting in its disintegration. Participants emphasized that fulfilling the requirements of Islamic law goes beyond material matters, extending to fairness in emotions and treatment to the best of the husband’s ability, recognizing that humans are not accountable for feelings beyond their control. This study, therefore, serves as a practical reference for those considering polygamy. It underscores the importance of understanding the rulings of Islamic law related to this matter to ensure familial stability and avoid the negative consequences of injustice or misinterpretation. Adhering to justice is the key to maintaining successful marital relationships in the context of polygamy.

STRATEGIC GAMIFICATION FOR RELIGIOUS LEARNING: AN EMPIRICAL LITERATURE REVIEW

This study aims to empirically examine the effectiveness of gamification strategies in religious learning as well as identify the challenges and opportunities that exist in efforts to enrich the learning experience of students under the Dini Integrated Curriculum known as Kurikulum Bersepadu Dini (KBD). Through a comprehensive and detailed literature review, this study analyzes the use of innovative gamification elements such as artificial intelligence (AI), augmented reality (AR), and advanced multimedia support in increasing students' motivation and interest in learning religion in Arabic Language. The results of the study show that the integration of this technology with traditional gamification elements such as points, badges, and leaderboards can trigger deeper student engagement and improve learning effectiveness. Students show a higher interest in learning activities and the ability to understand and remember religious concepts more deeply and effectively. However, this study also identified several challenges in the implementation of gamification, including the urgent need for comprehensive training and professional development for teachers as well as the provision of sound technological infrastructure and technical support in schools. By providing practical guidance and detailed recommendations for teachers, this study aims to assist in the application of effective gamification techniques in religious teaching, particularly in the context of KBD. This study concludes that gamification, if applied with the right strategy, has great potential to enrich the religious learning experience and achieve comprehensive and holistic educational goals under KBD, further fostering a generation of more knowledgeable and highly motivated students. With this, it is hoped that religious teaching can become more dynamic, interesting and relevant to today's young generation, as well as fulfilling the aspirations of the National Education Philosophy, the Islamic Education Philosophy and the Malaysian Education Development Plan.

AS DORES QUE SÃO DURAS: UMA PERPESCTIVA MULTIFATORIAL SOBRE O SUÍCIDIO

Yellow September, by focusing on specific actions and visual campaigns, ignores structural causes of the increase in suicide rates, such as poor access to mental health, lack of investment in professionals and the absence of a necessary support network. Furthermore, the campaign can be criticized for focusing excessively on the individual aspect of suicide, without giving due attention to the social and systemic factors that influence it, such as inequality, poverty, social exclusion and failed public policies. The emphasis on a single month of awareness-raising minimizes the need for continuous and long-term intervention, which includes prevention on different fronts and the provision of sustained support throughout the year. The general objective of this research is to analyze the gaps between the intentions of Yellow September and the practical results observed, focusing on how the stigma about suicide and mental health persists in different social groups. The methodology adopted in this work uses the deductive method, which tests the validity of theories and formulates hypotheses for analysis, and is exploratory, aiming to provide an initial understanding of the problem. The technical procedure is bibliographic research, based on previously published sources such as articles, books and dissertations. The approach is qualitative, focused on the interpretation of social and human phenomena, ideal for exploring complex and cultural issues that cannot be quantified. As a result, more than 800,000 people die due to suicide every year and it is the second leading cause of death in young people aged 15 to 29. In Brazil, between 1996 and 2016, Brazil recorded 183,484 deaths by suicide, representing an increase of 69.6% in that period. According to data from DATASUS, in 2018, 12,733 deaths by suicide were recorded in the country, which corresponds to a rate of 6.1 suicides per 100,000 inhabitants, resulting in approximately 35 deaths per day. Therefore, the conclusion revealed that, despite advances in public debate and visibility of the topic, there are still significant gaps in the implementation of ongoing preventive policies, as well as gaps in the academic training of health professionals, especially with regard to addressing death and suicide. In addition, misinformation and stigma still constitute major obstacles to the advancement of effective public policies and to breaking taboos surrounding suicide.

Completed suicide risk factors among people living with HIV in Hunan Province identified through a psychological autopsy case–control study

Accumulating evidence has shown an increased risk of suicide among people living with HIV/AIDS (PLWHA). However, few studies have explored the risk factors associated with completed suicide among PLWHA. This study aimed to identify the characteristics and causes of completed suicide among PLWHA to guide future targeted suicide prevention and intervention programs. A 1:1 matched case–control psychological autopsy study was conducted among PLWHA in Hunan Province. We recruited 63 PLWHA who died by suicide from January 1, 2013, to December 31, 2019, and 63 living controls matched for age, gender, and employment. Two informants for each participant were interviewed to collect data on participants’ sociodemographic characteristics, depressive symptoms, HIV-related stress, hopelessness, and social support. The median survival time from HIV diagnosis to completed suicide was 3.9 months (IQR: 0.57–14.13). Most completed suicides occurred within six months of HIV diagnosis (71.4%), with poisoning (34.9%) and hanging (22.2%) as the primary methods. After controlling for confounding factors, we identified four risk factors of completed suicide: not receiving antiretroviral treatment (OR = 6.805; 95% CI: 1.227 to 37.738), receiving low-income subsidy (OR = 16.272; 95% CI: 3.245 to 81.598), HIV-related stress (OR = 1.332; 95% CI: 1.089 to 1.629), and hopelessness (OR = 2.910; 95% CI: 1.378 to 6.144). PLWHA are at a high risk of suicide within the first six months of HIV diagnosis, indicating an urgent need for immediate suicide screening and timely intervention. Suicide risk is affected by multiple factors, including sociodemographic, clinical, and psychological factors, indicating the need for a multifactorial approach to suicide prevention, which may involve early initiation of ART treatment and provision of economic and psychosocial support.

Mothers' Violence Experiences and Provision of Emotional Support Following Child Sexual Abuse.

Emotional support from a non-offending caregiver, often the child's mother, is theorized to help buffer children from the consequences of child sexual abuse (CSA). However, many mothers struggle to provide effective emotional support, suggesting it may be important to assess for factors related to mothers' abilities to support their child. CSA frequently occurs in families that have experienced other types of violence, including intimate partner violence (IPV), and many mothers have their own personal history of child abuse. This research examined the prevalence and influence of mothers' experiences of child abuse and adult interpersonal violence on the provision of emotional support following their child's CSA disclosure. Participants included 120 mothers and their children (aged 7-17) recruited from a children's advocacy center following the disclosure of CSA. Mothers and children completed convergent measures of emotional support. Mothers also completed semi-structured interviews assessing their experiences of adult IPV and child physical abuse and sexual abuse. Most mothers had experienced IPV (68%) and child physical abuse (87%). Nearly half (49%) had experienced CSA. Regression analyses indicated that mothers' experiences of CSA were negatively associated with mother-report of emotional support (partial η2 = .05); however, mothers' experiences of IPV and child physical abuse were positively associated with child-report of emotional support (IPV, partial η2 = .06; physical abuse, partial η2 = .09). The results highlight the importance of assessing for mothers' experiences of violence to best support families receiving services for CSA.

Grit's Contribution to Developing Student School Engagement with Teacher Support as Moderator

School engagement is an important aspect that supports students' academic success. This study aims to prove the contribution of grit moderated by teacher support to students' school engagement. The participants of this study were 237 students, consisting of 94 males and 143 females, who were selected through a purposive sampling technique. The analysis shows that grit positively and significantly affects students' school engagement [β = 0.433 (43.3%), p-value = 0.001]. In moderation, the teacher support variable can moderate the influence of the grit variable on school engagement, with the magnitude of the effect increasing to 0.497 (49.7%) and a significance value of P = 0.043. Additional results of gender analysis of the level of school engagement of students at school are more excellent for male students than female students. These findings can be used to increase student engagement in schools by strengthening the quality of student grit and by moderating the provision of teacher support and attention.

EVALUATION OF EFFICIENCY OF INVESTMENT PROJECTS AND RESPONSIBILITY OF THEIR INITIATORS

Attracting investors plays a significant role in the development of the national economic complex and employment in the region, but the projects being implemented must correspond to regional priorities in terms of solving environmental and social problems. Social and economic assessment of investment proposals and business plans should be based on the assessment of parameters that comprehensively reflect the economic, social and environmental impact on the territory of implementation of investment projects. Social and economic assessment of investment projects of business entities in the region and the use of its results will determine the role of these projects in the development of the region, as well as ensure their rational selection for the provision of state support and increase its effectiveness. The article highlights the key aspects of defining an investment project and considers approaches to assessing the effectiveness of investment projects. The importance of applying measures of state support for investment projects by governing bodies is substantiated, taking into account the criterion of social responsibility of the project initiator.

THE IMPACT OF SUPERIOR SUPPORT ON BUILDING MOTIVATION AND WORK COMMITMENT: THE MALAYSIAN EXPERIENCE

The success of an organization greatly depends on having a highly motivated and committed workforce. A key factor influencing employee motivation and work commitment is the level of managerial support provided by supervisors and upper management. This study investigates the effects of superior support on building motivation and work commitment among employees in the Malaysian context. Utilizing a mixed-methods approach, the research combines quantitative and qualitative data collection and analysis. A survey was conducted with 345 employees across various industries in Malaysia to measure the relationship between superior support, employee motivation, and work commitment. This was complemented by in-depth interviews with 10 managers to gain deeper insights into how higher levels of support influence employee attitudes and behaviors. The findings reveal that superior support, encompassing both instrumental and emotional support, has a significant positive impact on employee motivation and commitment. Employees who perceive higher levels of support from their superiors tend to exhibit greater intrinsic motivation, as well as stronger affective and normative commitment to the organization. Qualitative data provides evidence that superior support fosters a sense of value and belonging among employees, which, in turn, strengthens their dedication and willingness to exert effort. This study contributes to the literature on human resource management and organizational behavior by elucidating the critical role of leadership support in shaping a motivated and committed workforce, particularly within the Malaysian cultural context. The results offer practical insights for managers and policymakers on strategies to enhance employee motivation and retention through the provision of superior support. Future research directions and study limitations are also discussed.

Resumption of In-Person Classes in Public Secondary Schools Division of Zambales: Priorities and Challenges for Shared Responsibility

This study sought to determine the priorities for shared responsibility in Public Secondary Schools Division of Zambales for the current resumption of facetoface in-person classes for the school year 2022-2023 conducted during the third quarter among school heads of the 13 Districts of Department of Education Schools Division of Zambales, Philippines. The research design was descriptive quantitative and utilized survey questionnaire as main research instrument. This study determined that the school heads are male middle aged adults, Master's degree holders, and served in the profession for two and a half decades as Principal I and IV while the teachers are female young adults, Baccalaureate degree holders with Master’s units; served in the teaching profession for a decade as Teacher I. The school heads and teachers’ perception towards the priorities for shared responsibility was very evident in terms of Provision of Support to Teachers. Both the school heads and teachers strongly agreed that there are challenges for shared responsibility during the resumption of in-person classes in public secondary schools. The ANOVA results revealed that there was significant difference in the perception on the priorities for shared responsibility during the resumption of in-person classes in terms of school heads’ highest educational attainment and designation. There was significant difference in terms of Provision of Support to Teachers, Students’ Study Habits and Parents’ Role in Learning when attributed to teachers’ length of service. The t-Test result showed that there was significant difference between the perceptions of the school heads and the teachers on the different priorities and challenges for shared responsibility during the resumption of in-person classes in public secondary schools. The findings resulted in the development of an Action Plan to address the priorities and challenges for shared responsibility during the resumption of in-person classes; and will become a basis for DepEd Division of Zambales policy, projects and plans consideration and future implementation.

The pandemic within a pandemic: mental health and wellbeing of racially Minoritised women experiencing domestic abuse during the COVID-19 pandemic in the UK

BackgroundThe prevalence of domestic abuse is greater in times of humanitarian crisis, and the COVID-19 pandemic has been no different. Considerable evidence indicates that domestic abuse disproportionately impacts the mental health and wellbeing of racially Minoritised women. The present study aimed to explore racially Minoritised women’s experiences of domestic abuse and mental health in the COVID-19 pandemic in the UK.MethodAn online cross-sectional survey was used with racially Minoritised women (n = 1202) in the UK during the third national lockdown.ResultsResults demonstrate complex interplay of psychosocial factors, such as the roles of autonomy, resilience, self-silencing, family functioning, and social support as predictors of mental health and wellbeing during the ‘shadow pandemic’.ConclusionImplications such as incorporating culturally competent mental health support, exploring the complex and multiple underpinnings of mental health in racially Minoritised victim-survivors of domestic abuse for future pandemic preparedness and support provision are discussed.

Evaluation of Factors Influencing Guidance and Counselling Programmes in Secondary Schools in Sokoto Metropolis

This study aims at evaluating the factors influencing guidance and counselling programmes and possible strategies to address them in some selected secondary schools in Sokoto metropolis, Sokoto state, Nigeria. Descriptive survey design was used to obtain descriptive and self-reported data and/or information from the participants in this study. The sample size was 400 participants comprising a total of 200 students, 150 teachers, 30 school counsellors, and 20 school administrators. Questionnaire was used for data collection. The data were analyzed using descriptive statistics. The result showed that lack of professional counsellors, lack of formal training for counsellors, lack of support from school administrators/government, lack of materials/facilities, lack of parental support, and lack or inadequate public awareness were some of the factors influencing guidance and counselling programmes in secondary schools. The result also indicated that strategies such as employing professional counsellors, creating public awareness, assigning only counselling services to counsellors, allocation of sufficient time to counselling services, and provision of adequate support by school administrators/government among others will significantly curb the problems facing guidance and counselling programmes in secondary schools. Many factors significantly influenced the guidance and counselling programmes in secondary schools. For effective guidance and counselling, strategies should be applied to curb the major factors that influenced the guidance and counselling programmes.

Providing ‘professionalism with compassion’; how the time for caring communication can improve experiences at the end-of-life at home, findings from a realist evaluation

BackgroundFor many patients and caregivers, attending to dying and death at home will be a new and fearful experience. This research brings new evidence on the central support of the Rapid Response Service (RRS), provided to those who chose to die at home. RRS’s are variable, although all seek to avoid unwanted hospital admissions and to respond flexibly to suit individual preferences for support. Staffed by specialist palliative and end-of-life care nurses, the RRS works alongside primary and acute care, but little is known on their impact.MethodsRealist evaluation is a theory driven approach which identifies patterns of generative causation; this approach ascertains what works, for who, why, and in what circumstances. In this study, initial theories were developed by the research team and subsequently tested through semi-structured realist interviews with patients, caregivers, RRS staff, and other health practitioners. Iterative rounds of data analysis were undertaken to tease out contexts, mechanisms and outcomes, testing and revising the theories, including the application of substantive theory. Finally, we produced refined programme theories (PTs) which provide the basis for wider application of findings.ResultsOverall, 36 participants contributed, and six areas of inquiry were developed. This paper sets out the data from one area, PT Skilled Communication. Several benefits arose from RRS staff having the time to talk to and with patients and caregivers: specifically, that this communication improved knowledge in a tailored and compassionate manner. These exchanges allayed fears and reduced uncertainty, improving confidence to care. This was particularly embedded in one RRS because of their holistic approach.ConclusionsSupporting death and dying at home is a novel and difficult experience for many; skilled communication, provided by specialist palliative care staff, can make a positive difference. Through their provision of compassionate support, RRS staff can help caregivers to recognise and respond to different symptoms and situations, reducing fear. By responding rapidly, only on request, they also meet individual preferences for contact. Together, this improves the opportunity for the last days and hours of life to be experienced, at home, in as affirmative a manner as possible.