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Background: Caring for someone with dementia can be physically and emotionally difficult. Acting as a caregiver can make it difficult to access sources of support, particularly in the later stages of dementia. This paper reports the development and presents the targets (subject areas) and components of a prototype website to support family caregivers of a person with dementia towards the end of life. Methods: Adopting an iterative approach and co-production methods the development process consisted of four stages: Stage1-Synthesis of data: three sources of data (interviews, systematic review and theory) were synthesised using tabulation, to identify the targets of the prototype; Stage2-Identifying intervention targets and components: a research development group (health practitioners, a family caregiver and academic experts) met to discuss the development, using a modified nominal group process, refining the synthesis from stage 1; Stage3-Developing the intervention prototype: an outline of the prototype was developed based on stage 1 and 2; and Stage4–User testing: interviews with caregivers testing the prototype website. Results: Qualitative interviews with caregivers identified four targets for the intervention: 1) feeling prepared and equipped; 2) feeling connected and supported; 3) valuing themselves as a caregiver and as an individual; 4) maintaining control of the caring situation and being the coordinator of care. The systematic review provided evidence on how and what components could address these targets, including providing information, peer support, contact with professionals, and psychological support. Theory helped to narrow the focus within each of these targets. Active discussion with the research development group and end users provided an outline of the prototype website. The prototype website presented addresses these targets with written information, videos from other caregivers, and peer and professional support sections. The subject areas covered included expectations at the end of life, support with day-to-day caring, care planning, and communication. Conclusions: This paper provides a detailed account of the development process of a prototype website for caregiver support. The transparent methodology and key lessons learnt from developing the prototype should help those who are developing similar interventions, across complex, progressive conditions and not just limited to dementia. [ABSTRACT FROM AUTHOR]

This paper reports the findings from a Delphi Study undertaken to identify the research priorities in children's palliative care in Ireland. Palliative care for children is a small and highly specialised field of healthcare that focuses on improving the quality of life of children living with, or dying from, a life-limiting condition. Ideally, support for children requiring palliative care begins at the time of diagnosis, which for many children with life-limiting conditions can be from birth. There is a notable overlap between the needs of children requiring palliative care and those with disabilities and other complex care needs, resulting in care being provided by a range of voluntary and statutory agencies. As a new specialty, there is a need to develop an evidence-based approach to providing children's palliative care. In order to do this in a systematic way, identification of the research priorities in children's palliative care within Ireland is required. [ABSTRACT FROM AUTHOR]

Background: Palliative care is mainly restricted to terminal care. General practitioners (GPs) are not trained to early identify palliative patients with cancer, COPD or heart failure. With the help of the RADboud indicators for PAlliative Care needs (RADPAC), we trained GPs to identify patients' needs and to make a proactive care plan. They were also able to join two role-plays where they discussed the patient's future, and consulted a palliative care consultant to fine-tune the care plan. We evaluated the programme with the GPs and consultants and noted its impact on their daily practice. Methods: Two years after they had participated in the programme, we held semi-structured interviews with the GPs and a focus group interview with the consultants and performed a thematic content analysis. Results: Six consultants and nine GPs participated in the programme. Most GPs and consultants mentioned positive changes in the thinking or acting of GPs regarding early palliative care. A number continued to use the tool to identify patients; most of the others noted they had internalised the indicators. Although half of them still considered discussing end-of-life aspects difficult, particularly in patients with organ failure, the others were more easily able to discuss the future with their palliative patients. Conclusion: Although most GPs and consultants were positive about the training programme and applying it in daily practice, we conclude that in future programmes, more attention needs to paid to timely identification of palliative patients with COPD or CHF and how to discuss the future with them. [ABSTRACT FROM AUTHOR]

Background: Demographic trends show an increasing number of elderly people and thus a growing need for palliative care (PC). Such care is increasingly being provided by long-term care (LTC) facilities. The present study aimed at exploring PC indicators of residents at LTC facilities belonging to a non-profit provider in Lower Saxony, Germany, in order to identify potential improvements. Methods: A descriptive cross-sectional study was conducted, drawing on routine nursing chart data. Structural data from 16 participating LTC facilities and the care data of all residents who died in 2019 (N = 471) were collected anonymously between March and May 2020. Based on key literature on quality indicators of PC in LTC facilities in Germany, a structured survey was developed by a multidisciplinary research team. The descriptive, comparative and inferential data analysis was conducted using the SPSS software package. Results: In total, the complete records of 363 (77%) residents who died in the participating LTC facilities in 2019 were retrieved. The records reflected that 45% of the residents had been hospitalized at least once during the last 6 months of their lives, and 19% had died in hospital. Advance care planning (ACP) consultation was offered to 168 (46%) residents, and 64 (38%) declined this offer. A written advance directive was available for 47% of the residents. A specialized PC team and hospice service volunteers were involved in caring for 6% and 14% of the residents, respectively. Cancer patients received support from external services significantly more frequently (p <.001) than did non-cancer patients. Differences emerged in the distribution of PC indicators between LTC facilities. Facilities that have more PC trained staff offered more ACP, supported by more specialized PC teams and hospice services, and had fewer hospitalizations. In addition, more volunteer hospice services were offered in urban facilities. Conclusions: Overall, a rather positive picture of PC in participating LTC facilities in Germany emerged, although there were differences in the expression of certain indicators between facilities. ACP consultation, volunteer hospice services, and hospital admissions appeared to be superior in LTC facilities with more trained PC staff. Therefore, PC training for staff should be further promoted. [ABSTRACT FROM AUTHOR]

Background: Broad consensus exists on the relevance of advance care planning in dementia. Although people with young-onset dementia and their family are hypothesized to have distinct needs and preferences in this area, they are hardly ever included in studies. Aim: We aim to explore the experiences with and views on advance care planning of people with young-onset dementia and their family caregivers. Design: A qualitative study was conducted, analyzing semi-structured interviews through the method of constant comparative analysis. Setting/participants: We included 10 people with young-onset dementia and 10 of their family caregivers in Flanders. Results: Participants lacked awareness about the concept of advance care planning, especially as a communication process. They had not or barely engaged in planning future care yet pointed out possible benefits of doing so. Initially, people with young-onset dementia and their caregivers directly associated advance care planning with planning for the actual end of life. When discussing advance care planning as a communication process, they paid ample attention to non-medical aspects and did not distinguish between medical, mental, and social health. Rather, respondents thought in the overarching framework of what is important to them now and in the future. Conclusions: Engagement in advance care planning might be hindered if it is too medicalized and exclusively patient-centered. To accommodate advance care planning to people with young-onset dementia's and their caregivers' needs, it should be presented and implemented as a holistic, flexible, and relational communication process. Policy and practice recommendations are provided on how to do so. [ABSTRACT FROM AUTHOR]

The ability to increase palliative and hospice services in the United States requires comprehensive, standardized education for clinicians. With a rise in the number of patients living with serious illnesses, medical-surgical nurses would benefit from more palliative and end-of-life care education. In this study, nurses' comfort in addressing physical, emotional, and spiritual needs for patients receiving palliative and hospice care was examined. [ABSTRACT FROM AUTHOR]

Objective: Advance care planning (ACP) allows individuals to express their preferences for medical treatment in the event that they become incapable of making their own decisions. This study assessed the efficacy of a conversation game intervention for increasing South Asian Indian Americans' (SAIAs') engagement in ACP behaviors as well as the game's acceptability and cultural appropriateness among SAIAs. Design: Eligible community-dwelling SAIAs were recruited at SAIA cultural events held in central Texas during the summer of 2016. Pregame questionnaires included demographics and the 55-item ACP Engagement Survey. Played in groups of 3–5, the game consists of 17 open-ended questions that prompt discussions of end-of-life issues. After each game session, focus groups and questionnaires were used to examine the game's cultural appropriateness and self-rated conversation quality. Postintervention responses on the ACP Engagement Survey and rates of participation in ACP behaviors were collected after 3 months through phone interviews or online surveys. Data were analyzed using descriptive statistics, frequencies, and paired t-tests comparing pre/post averages at a.05 significance level. Results: Of the 47 participants, 64% were female, 62% had graduate degrees, 92% had lived in the U.S. for >10 years, 87% were first-generation immigrants, and 74% had no advance directive prior to the game. At the 3-month follow-up, 58% of participants had completed at least one ACP behavior, 42% had discussed end-of-life issues with loved ones, 15% did so with their healthcare providers, and 18% had created an advanced directive. ACP Engagement Survey scores increased significantly on all four of the process subscales by 3 months postgame. Conclusion: SAIA individuals who played a conversation game had a relatively high rate of performing ACP behaviors 3 months after the intervention. These findings suggest that conversation games may be useful tools for motivating people from minority communities to engage in ACP behaviors. [ABSTRACT FROM AUTHOR]

To encourage citizens to plan their end-of-life care to protect their autonomy, Congress passed the Patient Self-Determination Act (PSDA) in 1990. Under the PSDA, all Medicare/Medicaid-funded agencies are required to ask if all the patients, upon admission, have advance directives (ADs). If they have not formulated an AD, agencies need to inform that they have a right to do so and provide them with the written information. Although this is required by law, there is no universal procedure or set standard approach to deliver the information to patients in these agencies. It is often unclear who provides and explains information on ADs, and what materials are provided. The purpose of this study was to understand the procedures and challenges presented in the delivery of information about ADs in agencies in response to the PSDA requirements. Using a case study approach, semi-structured interviews with personnel in nine agencies were analyzed and three overarching themes were identified: organizational procedures, staff interactions, and staff perceptions. The findings indicated that there is a need for AD-specific training for staff responsible for delivering AD information to their clients. Implementation of a formalized procedure/guidelines for information delivery would be helpful to maintain quality standards across agencies. [ABSTRACT FROM AUTHOR]

Background: Terminally ill patients at the end-of-life do transit between care settings due to their complex care needs. Problems of care fragmentation could result in poor quality of care. Aim: We aimed to evaluate the impact of an integrated hospice home care programme on acute care service usage and on the share of home deaths. Settings/participants: The retrospective study cohort comprised patients who were diagnosed with cancer, had an expected prognosis of 1 year or less, and were referred to a home hospice. The intervention group comprised deceased patients enrolled in the integrated hospice home care programme between September 2012 and June 2014. The historical comparison group comprised deceased patients who were referred to other home hospices between January 2007 and January 2011. Results: There were 321 cases and 593 comparator subjects. Relative to the comparator group, the share of hospital deaths was significantly lower for programme participants (12.1% versus 42.7%). After adjusting for differences at baseline, the intervention group had statistically significantly lower emergency department visits at 30 days (incidence rate ratio: 0.38; 95% confidence interval: 0.31–0.47), 60 days (incidence rate ratio: 0.61; 95% confidence interval: 0.54–0.69) and 90 days (incidence rate ratio: 0.69; 95% confidence interval: 0.62–0.77) prior to death. Similar results held for the number of hospitalisations at 30 days (incidence rate ratio: 0.48; 95% confidence interval: 0.40–0.58), 60 days (incidence rate ratio: 0.71; 95% confidence interval: 0.62–0.82) and 90 days (incidence rate ratio: 0.77; 95% confidence interval: 0.68–0.88) prior to death. Conclusion: Our results demonstrated that by integrating services between acute care and home hospice care, a reduction in acute care service usage could occur. [ABSTRACT FROM AUTHOR]

The article discusses a study conducted to describe the use of goals of care meetings in patients with advanced or refractory cancer at risk for critical care interventions. Topics discussed include study design and analysis of study, goals of care meetings in providing usual care team and palliative care, and improving concordance between patients' preferences and health care utilization.

The article discusses a study which investigates the perspective of health care professionals on pediatric advance care planning. Topics include conducting an interview with pediatric end-of-life care experts, the perceived problems and conflicts associated with such care planning, and identifying the barriers to the implementation advance care planning.

Aim: This study aimed to obtain perspectives from key stakeholders to inform the development of Australian national guidelines for a palliative approach to aged care in the community setting. Methods: A descriptive, exploratory qualitative design was used. Sampling was purposive. Data were collected during audiotaped, semistructured, individual and focus group interviews that addressed the need for the guidelines and aimed to identify practice areas for inclusion. Thematic analysis was undertaken. Results: Interviews were conducted across Australia and included 172 participants: health-care providers, consumers, volunteers and researchers/educators. Themes emerging from the data were: Provision of a Palliative Approach in Community Aged Care, Carer Support, Advance Care Planning, Physical and Psychological Symptom Assessment and Management, Psychosocial Support, Spiritual Support, Issues for Aboriginal or Torres Strait Islander People, Older People from Diverse Cultural and Language Groups, and Clients with Special Needs. Conclusion: Findings underpinned development of new guideline documents. [ABSTRACT FROM AUTHOR]

Background: Approximately 20% of seniors live with five or more chronic medical illnesses. Terminal stages of their lives are often characterized by repeated burdensome hospitalizations and advance care directives are insufficiently addressed. This study reports on the preliminary results of a Palliative Care Homebound Program (PCHP) at the Mayo Clinic in Rochester, Minnesota to service these vulnerable populations. Objective: The study objective was to evaluate inpatient hospital utilization and the adequacy of advance care planning in patients who receive home-based palliative care. Methods: This is a retrospective pilot cohort study of patients enrolled in the PCHP between September 2012 and March 2013. Two control patients were matched to each intervention patient by propensity scoring methods that factor in risk and prognosis. Primary outcomes were six-month hospital utilization including ER visits. Secondary outcomes evaluated advance care directive completion and overall mortality. Results: Patients enrolled in the PCHP group ( n=54) were matched to 108 controls with an average age of 87 years. Ninety-two percent of controls and 33% of PCHP patients were admitted to the hospital at least once. The average number of hospital admissions was 1.36 per patient for controls versus 0.35 in the PCHP ( p<0.001). Total hospital days were reduced by 5.13 days. There was no difference between rates of ER visits. Advanced care directive were completed more often in the intervention group (98%) as compared to controls (31%), with p<0.001. Goals of care discussions were held at least once for all patients in the PCHP group, compared to 41% in the controls. [ABSTRACT FROM AUTHOR]