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Background: Outcome measurement plays an increasing role in improving the quality, effectiveness, efficiency and availability of palliative care. Aim: To provide expert recommendations on outcome measurement in palliative care in clinical practice and research. Methods: Developed by a European Association for Palliative Care Task Force, based on literature searches, international expert workshop, development of outcome measurement guidance and international online survey. A subgroup drafted a first version and circulated it twice to the task force. The preliminary final version was circulated to wider expert panel and 28 international experts across 20 European Association for Palliative Care member associations and the European Association for Palliative Care Board of Directors and revised according to their feedback. The final version was approved by the European Association for Palliative Care Board for adoption as an official European Association for Palliative Care position paper. Results: In all, 12 recommendations are proposed covering key parameters of measures, adequate measures for the task, introduction of outcome measurement into practice, and national and international outcome comparisons and benchmarking. Compared to other recommendations, the White Paper covers similar aspects but focuses more on outcome measurement in clinical care and the wider policy impact of implementing outcome measurement in clinical palliative care. Patient-reported outcome measure feedback improves awareness of unmet need and allows professionals to act to address patients’ needs. However, barriers and facilitators have been identified when implementing outcome measurement in clinical care that should be addressed. Conclusion: The White Paper recommends the introduction of outcome measurement into practice and outcomes that allow for national and international comparisons. Outcome measurement is key to understanding different models of care across countries and, ultimately, patient outcome having controlled for differing patients characteristics. [ABSTRACT FROM AUTHOR]

A person's health status is one of the strongest determinants of well-being. The negative impact of poor health on subjective well-being may be moderated by providing care to individuals in need. In this paper, we investigate the relationships between receiving informal care and the amount of care received and subjective well-being among people aged 65 or older in selected European countries. Our analysis of data from the 6th wave of the Survey of Health, Ageing and Retirement in Europe (SHARE) showed that receiving regular informal care was associated with higher subjective well-being among older people in Northern European countries, and with lower subjective well-being among older males in Southern European countries. Moreover, we found that the perception of the amount of help received affected the subjective well-being of older people, as those who reported that the support they received was either insufficient or met their needs had lower subjective well-being than those who were not in need of care. Our results also showed that receiving formal care was negatively related with subjective well-being among older adults in Northern Europe and Central and Eastern Europe. In the context of population ageing and the growing need for care, social policies that support both sides of the caregiving relationship could enhance subjective quality of life. [ABSTRACT FROM AUTHOR]

Objectives: There is a growing consensus worldwide that palliative care needs to be both more inclusive of conditions other than cancer and to improve. This paper explores some common challenges currently faced by professionals providing palliative care for patients with either cancer or dementia across five countries. Method: One focus group (n = 7) and 67 interviews were conducted in 2012 across five countries: England, Germany, Italy, the Netherlands and Norway, with professionals from dementia, cancer and palliative care settings. Results: The interviews revealed five common challenges faced across the five countries: communication difficulties (between services; and between professionals, and patients and their families); the variable extent of structural/functional integration of services; the difficulties in funding of palliative care services; problematic processes of care (boundaries, definitions, knowledge, skills and inclusiveness) and, finally, time constraints. Conclusion: These are not problems distinct to palliative care, but they may have different origins and explanations compared to other areas of health care. This paper explored deeper themes hidden behind a discourse about barriers and facilitators to improving care. [ABSTRACT FROM AUTHOR]

Background and study aims: There is widespread consensus on the need for better indicators of the effectiveness of healthcare. We carried out an analysis of the validity of amenable mortality as an indicator of the effectiveness of healthcare, focusing on the potential use in routine surveillance systems of between-country variations in rates of mortality. We assessed whether the introduction of specific healthcare innovations coincided with declines in mortality from potentially amenable causes in seven European countries. In this paper, we summarise the main results of this study and illustrate them for four conditions. Data and methods: We identified 14 conditions for which considerable declines in mortality have been observed and for which there is reasonable evidence in the literature of the effectiveness of healthcare interventions to lower mortality. We determined the time at which these interventions were introduced and assessed whether the innovations coincided with favourable changes in the mortality trends from these conditions, measured using Poisson linear spline regression. All the evidence was then presented to a Delphi panel. Main results: The timing of innovation and favourable change in mortality trends coincided for only a few conditions. Other reasons for mortality decline are likely to include diffusion and improved quality of interventions and in incidence of diseases and their risk factors, but there is insufficient evidence to differentiate these at present. For most conditions, a Delphi panel could not reach consensus on the role of current mortality levels as measures of effectiveness of healthcare. Discussion and conclusions: Improvements in healthcare probably lowered mortality from many of the conditions that we studied but occurred in a much more diffuse way than we assumed in the study design. Quantification of the contribution of healthcare to mortality requires adequate data on timing of innovation and trends in diffusion and quality and in incidence of disease, none of which are currently available. Given these gaps in knowledge, between-country differences in levels of mortality from amenable conditions should not be used for routine surveillance of healthcare performance. The timing and pace of mortality decline from amenable conditions may provide better indicators of healthcare performance. [ABSTRACT FROM AUTHOR]

Background: research in care home settings is often negatively focused, portraying life as sterile and devoid of meaningful experiences. Care homes have the potential to influence people's lives socially, physically and psychologically. It is important to understand what factors contribute to this.Objective: to conduct a systematic qualitative review of care home life and provide practical recommendations to enhance residents' quality of life.Methods: the following databases were searched: PsycINFO, Medline, Web of Science, EMBASE, Allied and Complementary Medicine Database and Cumulative Index to Nursing and Allied Health Literature. References from appropriate journals and individual articles were checked. Papers that fitted our selection criteria were selected. Two independent reviewers assessed methodological study quality. Thematic analysis and meta-ethnographic methods were adapted to synthesise findings.Results: thirty-one studies were identified. People in care homes voiced concerns about lack of autonomy and difficulty in forming appropriate relationships with others. Four key themes were identified: (i) acceptance and adaptation, (ii) connectedness with others, (iii) a homelike environment, (iv) caring practices.Conclusion: positive experiences in care homes can occur and are important for residents' quality of life. The review supports literature highlighting the need for relationship-centred approaches to care and emphasises the importance of understanding the resident's attitude towards living in care homes. [ABSTRACT FROM AUTHOR]

Purpose: Children with hypoplastic left heart syndrome (HLHS) experience numerous vulnerabilities during transitions from hospital to home during their first year of life. This paper examines the parents' responses to the situations they experience during the initial interstage transition as described through illness blogs. Design and methods: A qualitative descriptive design through inductive theme development using thematic analysis was performed for this study. Text data were used from publically available blogs written by parents of HLHS children on their feelings and experiences during transitions between hospital‐ and home‐care during the interstage period. Results: Six blogs were analyzed. Overall, the lack of difference in normalcy for these parents and their families was apparent. Major themes included: thoughts and feelings when discharged from the hospital, difficulties with hospital readmissions, protecting their child from infection, and developing a support system. Conclusions: Parents looked forward to going home and learned all they could about properly caring for their child before going home. They were disappointed and frustrated when returning to the hospital for either emergency or scheduled admissions and were not prepared to see their child in the intensive care unit environment again. Many parents isolated themselves and avoided the hospital as much as possible to avoid their child developing an infection. All parents had support systems through family and/or friends and found an unexpected sense of support through their blog families. [ABSTRACT FROM AUTHOR]