Next of Kin Memorial Scroll

Next of kin memorial scroll commemorating those who fell for King and Country. At the bottom of the scroll it says "Lieut. Samuel DeVeaux Woodruff Canadian Light Infantry". Enclosed with this scroll is a note of sympathy from the King and Queen signed by the Secretary of State for War.

Kommunala riktlinjer för anhöriganställningar : En kvalitativ innehållsanalys med feministisk teoriansats

Det övergripande syftet var att undersöka kommunala riktlinjer för anhöriganställningar tillgängliga på kommunernas hemsidor, dvs regeldokument gällande situationer där en anhörig anställs för att vårda en närstående. Det övergripande syftet har byggts upp utifrån följande tre frågeställningar angående hur kommunerna i Sverige beskriver: 1) vilka situationer som berättigar anhöriganställning, 2) hur det säkerställs att den äldre personen skall få sina behov tillgodosedda samt 3) hur säkerställs den anhöriganställdes rättigheter/välmående? Det saknas lagstöd för anhöriganställningar som rättighet, och det kommunala självstyret avgör om kommunen erbjuder denna omsorgsform. På senare tid har anhöriganställningar begränsats och förbjudits i flera svenska kommuner, och enligt uppgifter är det cirka 55–65 % av Sveriges kommuner som tillåter anhöriganställningar. Det är mestadels kvinnor med utländsk bakgrund som är anhöriganställda numera, och feministisk omsorgsforskning och media lyfter fram anhöriganställningar som en kvinnofälla och som en risk för integration av invandrare. I studien inkluderas riktlinjer från totalt 21 kommuner, vilka analyserades med kvalitativ innehållsanalys enligt Elo & Kyngäs (2007). De undersökta riktlinjerna hittades från hemsidorna för Sveriges 121 medelstora och stora kommuner (mer än 20 000 invånare). Resultatet har bearbetats med hjälp av feministisk teori (Hirdman 2012). Resultatet visar att det överlag finns få riktlinjer tillgängliga i Sveriges kommuner och att regelverken skiljer sig åt i de olika kommunerna.  I de riktlinjer som finns är ofta innehållet allmänna eller oklara beskrivningar. En slutsats är därför att många kommuner säkerställer sitt eget handlingsutrymme och ett tolkningsföreträde genom otydliga och allmänt hållna regler i sina riktlinjer. Utifrån ett feministiskt perspektiv kan dessa tolkningsföreträden skapa orättvisa strukturer och skillnader i förutsättningar och villkor för de äldre och för deras anhörigvårdare avseende anhöriganställningar. Slutligen visar resultatet på att de få detaljerade beskrivningarna prioriterar de äldres rättigheter framför de anhöriganställdas. Säkerställandet av de anhöriganställdas rättigheter beskrivs huvudsakligen att ske genom att kontrollera och styra de anhöriganställda. De anhöriganställda är ofta osynliga i riktlinjerna, betraktas som pseudoanställda och hamnar därför mellan stolarna vad gäller stödbehovet (Sand 2010).

Designing for dementia : an assessment of the impact of the physical environment on wayfinding success for residents in long term care settings

It is acknowledged that one of the consequences of the ageing process is cognitive decline, which leads to an increase in the incidence of illnesses such as dementia. This has become ever more relevant due to the projected increase in the ageing demographic. Dementia affects visuo-spatial perception, causing difficulty with wayfinding, even during the early stages of the disease. The literature widely recognises the physical environment’s role in alleviating symptoms of dementia and improving quality of life for residents. It also identifies the lack of available housing options for older people with dementia and consequently the current stock is ill-equipped to provide adequate support.
Recent statistics indicate that 80% of those residing in nursing or residential care homes have some form of dementia or severe memory problems. The shift towards institutional care settings, the need for specialist support and care, places a greater impetus on the need for a person-centred approach to tackle issues related to wayfinding and dementia.
This thesis therefore aims to improve design for dementia in nursing and residential care settings in the context of Northern Ireland. This will be undertaken in order to provide a better understanding of how people with dementia experience the physical environment and to highlight features of the design that assist with wayfinding. Currently there are limited guidelines on design for dementia, meaning that many of these are theoretical, anecdotal and not definitive. Hence a greater verification to address the less recognised design issues is required. This is intended to ultimately improve quality of life, wellbeing, independence and uphold the dignity of people with dementia living in nursing or residential care homes.
The research design uses a mixed methods approach. A thorough preparation and consideration of ethical issues informed the methodology. The various facets were also trialled and piloted to identify any ethical, technological, methodological, data collection and analysis issues. The protocol was then amended to improve or resolve any of the aforementioned issues. Initially a questionnaire based on leading design recommendations was conducted with home managers. Semi-structured interviews were developed from this and conducted with staff and resident’s next of kin. An evidence-based approach was used to design a study which used ethnographic methods, including a wayfinding task. This followed a repeated measures design which would be used to actively engage residents with dementia in the research. Complementary to the wayfinding task, conversational and semi-structured interviews were used to promote dialogue and direct responses with the person with dementia. In addition to this, Space Syntax methodologies were used to examine the physical properties of the architectural layout. This was then cross-examined with interview responses and data from the wayfinding tasks.
A number of plan typologies were identified and were determined as synonymous with decision point types which needed to be made during the walks. The empirical work enabled the synthesis of environmental features which support wayfinding.
Results indicate that particular environmental features are associated with improved performance on the wayfinding tasks. By enhancing design for dementia, through identifying the attributes, challenges with wayfinding may be overcome and the benefits of the physical environment can be seen to promote wellbeing.
The implications of this work mean that the environmental features which have been highlighted from the project can be used to inform guidelines, thus adding to existing knowledge. Future work would involve the dissemination of this information and the potential for it to be made into design standards or regulations which champion design for dementia. These would increase awareness for designers and stakeholders undertaking new projects, extensions or refurbishments.
A person-centred, evidence-based design was emphasised throughout the project which guaranteed an in-depth study. There were limitations due to the available resources, time and funding. Future research would involve testing the identified environmental features within a specific environment to enable measured observation of improvements.

Family satisfaction in the intensive care unit: cross-cultural adaptation of a questionnaire

PURPOSE: Family needs and expectations are often unmet in the intensive care unit (ICU), leading to dissatisfaction. This study assesses cross-cultural adaptability of an instrument evaluating family satisfaction in the ICU. MATERIALS AND METHODS: A Canadian instrument on family satisfaction was adapted for German language and central European culture and then validated for feasibility, validity, internal consistency, reliability, and sensitivity. RESULTS: Content validity of a preliminary translated version was assessed by staff, patients, and next of kin. After adaptation, content and comprehensibility were considered good. The adapted translation was then distributed to 160 family members. The return rate was 71.8%, and 94.4% of questions in returned forms were clearly answered. In comparison with a Visual Analogue Scale, construct validity was good for overall satisfaction with care (Spearman rho = 0.60) and overall satisfaction with decision making (rho = 0.65). Cronbach alpha was .95 for satisfaction with care and .87 for decision-making. Only minor differences on repeated measurements were found for interrater and intrarater reliability. There was no floor or ceiling effect. CONCLUSIONS: A cross-cultural adaptation of a questionnaire on family satisfaction in the ICU can be feasible, valid, internally consistent, reliable, and sensitive.

Impact of a communication strategy on family satisfaction in the intensive care unit.

BACKGROUND Family satisfaction of critically ill patients has gained increased interest as important indicator to evaluate the quality of care in the intensive care unit (ICU). The family satisfaction in the ICU questionnaire (FS-ICU 24) is a well-established tool to assess satisfaction in such settings. We tested the hypothesis that an intervention, aiming at improved communication between health professionals and patients' next of kin in the ICU improves family satisfaction, as assessed by FS-ICU 24. METHODS Using a multicenter before-and-after study design, we evaluated medium-term effectiveness of VALUE, a recently proposed strategy aiming at improved communication. Satisfaction was assessed using the FS-ICU 24 questionnaire. Performance-importance plots were generated in order to identify items highly correlated with overall satisfaction but with low individual score. RESULTS A total of 163 completed family questionnaires in the pre-intervention and 118 in the post-intervention period were analyzed. Following the intervention, we observed: (1) a non-significant increase in family satisfaction summary score and sub-scores; (2) no decline in any individual family satisfaction item, and (3) improvement in items with high overall impact on satisfaction but quoted with low degree of satisfaction. CONCLUSION No significant improvement in family satisfaction of critically ill adult patients could be found after implementing the VALUE strategy. Whether these results are due to insufficient training of the new strategy or a missing effect of the strategy in our socio-economic environment remains to be shown.

Enhancing the capacity of kin caregivers and their families to meet the needs of children left behind

Based on qualitative research of the experiences of 23 kin caregivers and five school personnel, this article explores the role of informal kinship care in addressing the needs of school-age children left behind in rural China. The findings of this study suggest that kin caregivers' child-rearing capacity is limited in the rural context, and they are often overwhelmed by children's diverse and complex needs, particularly their emotional ones. In view of the huge population and their vulnerability, it is imperative for the state to take up its responsibilities and develop specific social work services and other support for children left behind and their families. 根据对23位亲属照顾者和5位学校人员的质性研究，文章探讨在处理中国留守学龄儿童的需要时，非正式亲属照料所担当的角色。研究发现，在农村的亲属照料者的抚养儿童能力有限，而且他们时常在面对儿童众多复杂的需求时应接不暇，问题又以情绪需要尤甚。有见于留守儿童的数目众多和易受伤害，政府急切需要承担相关的责任，为留守儿童及其家庭发展专门的社会工作服务和其他支援。

Overview of the ShARe/CLEF eHealth Evaluation Lab 2014

This paper reports on the 2nd ShARe/CLEFeHealth evaluation lab which continues our evaluation resource building activities for the medical domain. In this lab we focus on patients' information needs as opposed to the more common campaign focus of the specialised information needs of physicians and other healthcare workers. The usage scenario of the lab is to ease patients and next-of-kins' ease in understanding eHealth information, in particular clinical reports. The 1st ShARe/CLEFeHealth evaluation lab was held in 2013. This lab consisted of three tasks. Task 1 focused on named entity recognition and normalization of disorders; Task 2 on normalization of acronyms/abbreviations; and Task 3 on information retrieval to address questions patients may have when reading clinical reports. This year's lab introduces a new challenge in Task 1 on visual-interactive search and exploration of eHealth data. Its aim is to help patients (or their next-of-kin) in readability issues related to their hospital discharge documents and related information search on the Internet. Task 2 then continues the information extraction work of the 2013 lab, specifically focusing on disorder attribute identification and normalization from clinical text. Finally, this year's Task 3 further extends the 2013 information retrieval task, by cleaning the 2013 document collection and introducing a new query generation method and multilingual queries. De-identified clinical reports used by the three tasks were from US intensive care and originated from the MIMIC II database. Other text documents for Tasks 1 and 3 were from the Internet and originated from the Khresmoi project. Task 2 annotations originated from the ShARe annotations. For Tasks 1 and 3, new annotations, queries, and relevance assessments were created. 50, 79, and 91 people registered their interest in Tasks 1, 2, and 3, respectively. 24 unique teams participated with 1, 10, and 14 teams in Tasks 1, 2 and 3, respectively. The teams were from Africa, Asia, Canada, Europe, and North America. The Task 1 submission, reviewed by 5 expert peers, related to the task evaluation category of Effective use of interaction and targeted the needs of both expert and novice users. The best system had an Accuracy of 0.868 in Task 2a, an F1-score of 0.576 in Task 2b, and Precision at 10 (P@10) of 0.756 in Task 3. The results demonstrate the substantial community interest and capabilities of these systems in making clinical reports easier to understand for patients. The organisers have made data and tools available for future research and development.

The influence of primary care clinic characteristics on the quality of care for depression in patients with different comorbidity profiles

Dans les services de première ligne, la majorité des personnes atteintes de dépression souffrent également d’autres maladies chroniques comorbides. Offrir des soins de haute qualité à ces patients représente un défi important pour les intervenants en première ligne ainsi que pour le système de santé. Il y a des raisons de croire que les contextes organisationnels dans lesquels les intervenants pratiquent ont une influence importante sur les soins. Cependant, peu d’études ont examiné directement la façon dont les caractéristiques des cliniques facilitent ou entravent les soins offerts aux patients atteints de dépression et de différents types de maladies chroniques comorbides. L’objectif général de ce projet de recherche était donc de mieux comprendre comment différentes caractéristiques des cliniques de première ligne influencent la qualité des soins pour la dépression chez des patients ayant différents profils de comorbidité. La thèse comporte deux études. Tout d'abord, nous avons effectué une revue systématique examinant les relations entre la comorbidité physique chronique et la qualité des soins pour la dépression dans les services de première ligne afin de clarifier la nature de ces relations et d’identifier les facteurs qui pourraient influer sur ces relations. Ensuite, nous avons effectué une étude aux méthodes mixtes ayant deux volets : (a) un volet quantitatif examinant les relations entre la qualité des soins pour la dépression, les profils de comorbidité des patients, et les caractéristiques des cliniques de première ligne par le biais d’analyses de régression multiniveaux de données issues de deux enquêtes, et (b) un volet qualitatif basé sur une étude de cas explorant les perceptions des professionnels des services de première ligne sur les facteurs organisationnels pouvant influencer la qualité des soins offerts aux patients souffrant de dépression et d’autres maladies chroniques comorbides. Les résultats de ces études ont montré que, bien que la qualité des soins de la dépression en soins primaires soit sous-optimale, certains sous-groupes de patients dépressifs sont plus à risque que d’autres de recevoir des soins pour la dépression inadéquats, notamment des patients ayant uniquement des comorbidités chroniques physiques. Cependant, plusieurs caractéristiques des cliniques de première ligne semblent faciliter l’offre de soins de qualité aux patients atteints de dépression et de maladies chroniques comorbides : les normes et les valeurs liées au travail d'équipe et le soutien mutuel, l'accès au soutien des professionnels ayant une expertise en santé mentale, l’utilisation des algorithmes de traitement et d’autres outils d’aide à la décision pour la dépression, et l’absence d’obstacles liés aux modèles de rémunération inadéquats. Une des façons dont ces caractéristiques favorisent la qualité est en facilitant la circulation des connaissances dans les cliniques de première ligne. Nos résultats suggèrent que des interventions organisationnelles ciblées sont nécessaires pour améliorer la qualité des soins pour la dépression que reçoivent les patients ayant des maladies chroniques comorbides. Ces interventions peuvent viser différents domaines organisationnels (ex : caractéristiques structurelles/stratégiques, sociales, technologies et épistémiques) mais doivent aussi prendre en compte comment les éléments de chaque domaine interagissent et comment ils pourraient influencer les soins pour des patients ayant des profils de comorbidité différents.

Patient satisfaction with care in the intensive care unit: can we rely on proxies?

To investigate whether next of kin can be addressed as proxy to assess patients' satisfaction with care in the intensive care unit (ICU).

Organ donation in Switzerland - an analysis of factors associated with consent rate

BACKGROUND AND AIM Switzerland has a low post mortem organ donation rate. Here we examine variables that are associated with the consent of the deceased's next of kin (NOK) for organ donation, which is a prerequisite for donation in Switzerland. METHODS AND ANALYSIS During one year, we registered information from NOK of all deceased patients in Swiss intensive care units, who were approached for consent to organ donation. We collected data on patient demographics, characteristics of NOK, factors related to the request process and to the clinical setting. We analyzed the association of collected predictors with consent rate using univariable logistic regression models; predictors with p-values <0.2 were selected for a multivariable logistic regression. RESULTS Of 266 NOK approached for consent, consent was given in 137 (51.5%) cases. In multivariable analysis, we found associations of consent rates with Swiss nationality (OR 3.09, 95% CI: 1.46-6.54) and German language area (OR 0.31, 95% CI: 0.14-0.73). Consent rates tended to be higher if a parent was present during the request (OR 1.76, 95% CI: 0.93-3.33) and if the request was done before brain death was formally declared (OR 1.87, 95% CI: 0.90-3.87). CONCLUSION Establishing an atmosphere of trust between the medical staff putting forward a request and the NOK, allowing sufficient time for the NOK to consider donation, and respecting personal values and cultural differences, could be of importance for increasing donation rates. Additional measures are needed to address the pronounced differences in consent rates between language regions.

Preserving Family: Themes from a Qualitative Study of Kin Caregivers

This article presents themes from a qualitative study of 58 African American female kinship caregivers in San Francisco. Core concepts that emerged describe various paths along which children move into kin homes, and caregivers' mixed emotional reactions to becoming surrogate parents. Women also discussed multiple family roles they assumed after taking in children. Responses highlight three primary reasons for becoming caregivers that center on providing for and protecting these children—particularly from the perceived threat of the public foster care system—and ultimately preserving the family unit. Paradoxically, caregivers' reasons mirror the stated goals of the public foster care system, which they view as a threat to family stability. We discuss the problems of implementing practice and policy recommendations for permanency and family preservation and how to bridge the gap between the deeply held negative beliefs of African American caregivers towards the public system and begin to build trust.

Neonatal palliative care attitude scale : development of an instrument to measure the barriers to and facilitators of palliative care in neonatal nursing

OBJECTIVE The aim of this research project was to obtain an understanding of the barriers to and facilitators of providing palliative care in neonatal nursing. This article reports the first phase of this research: to develop and administer an instrument to measure the attitudes of neonatal nurses to palliative care. METHODS The instrument developed for this research (the Neonatal Palliative Care Attitude Scale) underwent face and content validity testing with an expert panel and was pilot tested to establish temporal stability. It was then administered to a population sample of 1285 neonatal nurses in Australian NICUs, with a response rate of 50% (N 645). Exploratory factor-analysis techniques were conducted to identify scales and subscales of the instrument. RESULTS Data-reduction techniques using principal components analysis were used. Using the criteria of eigenvalues being 1, the items in the Neonatal Palliative Care Attitude Scale extracted 6 factors, which accounted for 48.1% of the variance among the items. By further examining the questions within each factor and the Cronbach’s of items loading on each factor, factors were accepted or rejected. This resulted in acceptance of 3 factors indicating the barriers to and facilitators of palliative care practice. The constructs represented by these factors indicated barriers to and facilitators of palliative care practice relating to (1) the organization in which the nurse practices, (2) the available resources to support a palliative model of care, and (3) the technological imperatives and parental demands. CONCLUSIONS The subscales identified by this analysis identified items that measured both barriers to and facilitators of palliative care practice in neonatal nursing. While establishing preliminary reliability of the instrument by using exploratory factor-analysis techniques, further testing of this instrument with different samples of neonatal nurses is necessary using a confirmatory factor-analysis approach.

The relationship between clinical outcomes and quality of life for residents of aged care facilities

Objectives It is widely assumed improving care in residential facilities will improve quality of life (QoL), but little research has explored this relationship. The Clinical Care Indicators (CCI) Tool was developed to fill an existing gap in quality assessment within Australian residential aged care facilities and it was used to explore potential links between clinical outcomes and QoL. Design and Setting Clinical outcome and QoL data were collected within four residential facilities from the same aged care provider. Subjects Subjects were 82 residents of four facilities. Outcome Measures Clinical outcomes were measured using the CCI Tool and QoL data was obtained using the Australian WHOQOL‑100. Results Independent t‑test analyses were calculated to compare individual CCIs with each domain of the WHOQOL‑100, while Pearson’s product moment coefficients (r) were calculated between the total number of problem indicators and QoL scores. Significant results suggested poorer clinical outcomes adversely affected QoL. Social and spiritual QoL were particularly affected by clinical outcomes and poorer status in hydration, falls and depression were most strongly associated with lower QoL scores. Poorer clinical status as a whole was also significantly correlated with poorer QoL. Conclusions Hydration, falls and depression were most often associated with poorer resident QoL and as such appear to be key areas for clinical management in residential aged care. However, poor clinical outcomes overall also adversely affected QoL, which suggests maintaining optimum clinical status through high quality nursing care, would not only be important for resident health but also for enhancing general life quality.

End-of-life care pathways for improving outcomes in caring for the dying (Protocol)

We aim to assess the effects of end-of-life care pathways, compared with usual care or with care guided by another end-of-life care pathway across all healthcare settings (hospitals, residential aged care facilities, community). In particular, we aim to assess the effects on symptom severity and quality of life of people who are dying and/or those related to the care such as families, caregivers and health professionals.