D3.5 – First Storytelling Framework

This document presents the first release of the project’s storytelling framework, which is composed by two assets. The purpose of this framework is to facilitate the use of interactive storytelling for the development of applied games. More precisely, the framework is meant to aid developers in the creation of game scenarios where both players and autonomous characters are playing an active role in a narrative that unfolds according to their actions. The document describes the current state for the assets that are part of this framework, also providing links to the source code of the assets as well as associated demonstrations and documentation. The primary audience for the contents of this deliverable are the game developers that will use the proposed framework in their development process. The information about the specific RAGE use cases that are using the framework is written in Deliverable 4.2.

Nursing Home Care- Nursing Students as Carers discussing and addressing the negatives; a Northern Ireland Perspective

Abstract
The quality of nursing home care for some remains a significant cause of concern. This paper explores and discusses some of the significant critiques and limitations to nursing home care within the UK, particularly and including end of life care. The paper also explores some of the international literature by way of comparison.
Aim
To identify some of the characteristics contributing to the quality of holistic care within nursing homes
Methods
Two short narratives drawn from the experiences of nursing home care within Northern Ireland. The narrators (and co-authors to the paper) are first year student nurses who are also employed (part-time) as carers within nursing homes
Results
The paper identifies evidence of good nursing and care, together with evident quality in end of life care within nursing homes. The paper addresses the context of nursing home care and explores significant characteristics that reflect in the delivery of holistic care to nursing home residents, including the important role of a `culture’ of care, ongoing and specialist training( particularly and including within end of life care) and the important impact in the quality of nursing home leadership.
The paper concludes with some short recommendations to better develop practice within nursing homes

PIPc study: development of indicators of potentially inappropriate prescribing in children (PIPc) in primary care using a modified Delphi technique

Objective There is limited evidence regarding the quality of prescribing for children in primary care. Several prescribing criteria (indicators) have been developed to assess the appropriateness of prescribing in older and middle-aged adults but few are relevant to children. The objective of this study was to develop a set of prescribing indicators that can be applied to prescribing or dispensing data sets to determine the prevalence of potentially inappropriate prescribing in children (PIPc) in primary care settings.


Design Two-round modified Delphi consensus method.


Setting Irish and UK general practice.


Participants A project steering group consisting of academic and clinical general practitioners (GPs) and pharmacists was formed to develop a list of indicators from literature review and clinical expertise. 15 experts consisting of GPs, pharmacists and paediatricians from the Republic of Ireland and the UK formed the Delphi panel.


Results 47 indicators were reviewed by the project steering group and 16 were presented to the Delphi panel. In the first round of this exercise, consensus was achieved on nine of these indicators. Of the remaining seven indicators, two were removed following review of expert panel comments and discussion of the project steering group. The second round of the Delphi process focused on the remaining five indicators, which were amended based on first round feedback. Three indicators were accepted following the second round of the Delphi process and the remaining two indicators were removed. The final list consisted of 12 indicators categorised by respiratory system (n=6), gastrointestinal system (n=2), neurological system (n=2) and dermatological system (n=2).


Conclusions The PIPc indicators are a set of prescribing criteria developed for use in children in primary care in the absence of clinical information. The utility of these criteria will be tested in further studies using prescribing databases.

Mobile Phones and Contact Arrangements for Children Living in Care

This article reports the findings from the first UK study to examine the use of mobile phones by looked after children. Contact with family and friends is important, but it has sometimes to be carefully managed to avoid unintended consequences such as placement instability. The study examined the ways in which mobile phone technology impacts on contact, drawing on the experiences of children and young people in foster-care and residential care, and of policy makers, social workers, foster parents and residential care staff. No guidance was available that addressed the issue of mobile phone contact arrangements for looked after children and young people. Three years on from the start of the study, this remains the case in the area where the study was conducted, resulting in variation in the way mobile phone use for contact is managed; the issue appears only to be specifically addressed when identified as a problem. The position of mobile phone facilitated contact as a recognised form of contact requires review. The evidence suggests it should routinely form part of children’s care plans, and that residential staff and foster parents need to be adequately prepared and supported for the dynamics of mobile phone facilitated contact.

Improving Readability of Swedish Electronic Health Records through Lexical Simplification : First Results

This paper describes part of an ongoing effort to improve the readability of Swedish electronic health records (EHRs). An EHR contains systematic documentation of a single patient’s medical history across time, entered by healthcare professionals with the purpose of enabling safe and informed care. Linguistically, medical records exemplify a highly specialised domain, which can be superficially characterised as having telegraphic sentences involving displaced or missing words, abundant abbreviations, spelling variations including misspellings, and terminology. We report results on lexical simplification of Swedish EHRs, by which we mean detecting the unknown, out-ofdictionary words and trying to resolve them either as compounded known words, abbreviations or misspellings.

Evaluation use within a humanitarian non-governmental organization’s health care user-fee exemption program in West Africa

L’évaluation de l’action humanitaire (ÉAH) est un outil valorisé pour soutenir l’imputabilité, la transparence et l’efficience de programmes humanitaires contribuant à diminuer les inéquités et à promouvoir la santé mondiale. L’EAH est incontournable pour les parties prenantes de programme, les bailleurs de fonds, décideurs et intervenants souhaitant intégrer les données probantes aux pratiques et à la prise de décisions. Cependant, l’utilisation de l’évaluation (UÉ) reste incertaine, l’ÉAH étant fréquemment menée, mais inutilisé. Aussi, les conditions influençant l’UÉ varient selon les contextes et leur présence et applicabilité au sein d’organisations non-gouvernementales (ONG) humanitaires restent peu documentées. Les évaluateurs, parties prenantes et décideurs en contexte humanitaire souhaitant assurer l’UÉ pérenne détiennent peu de repères puisque rares sont les études examinant l’UÉ et ses conditions à long terme. La présente thèse tend à clarifier ces enjeux en documentant sur une période de deux ans l’UÉ et les conditions qui la détermine, au sein d’une stratégie d’évaluation intégrée au programme d’exemption de paiement des soins de santé d’une ONG humanitaire. L’objectif de ce programme est de faciliter l’accès à la santé aux mères, aux enfants de moins de cinq ans et aux indigents de districts sanitaires au Niger et au Burkina Faso, régions du Sahel où des crises alimentaires et économiques ont engendré des taux élevés de malnutrition, de morbidité et de mortalité. Une première évaluation du programme d’exemption au Niger a mené au développement de la stratégie d’évaluation intégrée à ce même programme au Burkina Faso. La thèse se compose de trois articles. Le premier présente une étude d’évaluabilité, étape préliminaire à la thèse et permettant de juger de sa faisabilité. Les résultats démontrent une logique cohérente et plausible de la stratégie d’évaluation, l’accessibilité de données et l’utilité d’étudier l’UÉ par l’ONG. Le second article documente l’UÉ des parties prenantes de la stratégie et comment celle-ci servit le programme d’exemption. L’utilisation des résultats fut instrumentale, conceptuelle et persuasive, alors que l’utilisation des processus ne fut qu’instrumentale et conceptuelle. Le troisième article documente les conditions qui, selon les parties prenantes, ont progressivement influencé l’UÉ. L’attitude des utilisateurs, les relations et communications interpersonnelles et l’habileté des évaluateurs à mener et à partager les connaissances adaptées aux besoins des utilisateurs furent les conditions clés liées à l’UÉ. La thèse contribue à l’avancement des connaissances sur l’UÉ en milieu humanitaire et apporte des recommandations aux parties prenantes de l’ONG.

Exploring Ideas from Hospitality, Health Management, and Design for Senior Housing and Care: Insights from 2016 CIHF Senior Living Roundtable

The first Cornell Institute for Healthy Futures (CIHF) roundtable, held in April 2016, brought together senior-level executives, educators, and leaders in senior housing and care to share experiences and exchange ideas. CIHF roundtables are purposely limited to approximately 25 to 30 participants “at the table” to foster discussion on a more intimate basis than traditional conferences. In addition to the formal participants, students, faculty, and guests observed and interacted during the event and attended a separate panel discussion, and reception the evening before. Students, faculty, and industry leaders also met together at a working luncheon session to brainstorm ideas for recruiting and training young talent for careers in the senior housing and care industry.

Caring for Children Dying from Cancer at Home: a Qualitative Study of the Experience of Primary Care Practitioners

Background. The rarity of childhood cancers makes providing palliative care in the community an unusual event for primary care practitioners. Providing this care requires effective interprofessional collaboration with the team that forms to provide the care often working together for the first and only time. Objective. To explore the experiences of primary care practitioners following their involvement in the palliative care of a child with cancer at home. Methods. The study design was a community-based qualitative study. The study location was the West Midlands region. Purposeful sample of GPs and community nurses involved in providing palliative care to 12 children. One-to-one in-depth interviews with 47 primary care professionals (10 GPs and 37 community nurses) and 5 facilitated case discussions were undertaken. Field notes were documented and grounded theory data analysis undertaken: chronological comparative data analysis identifying generated themes. Results. GPs had minimal input into the preceding care of children undergoing treatment for cancer but sought to re-establish their role at the child’s transition to palliative care. GPs felt they had a role to play and could add value to this phase of care, highlighted their continuing role with the child’s family and acknowledged that they had gained from the experience of contributing. However, lack of specialist knowledge and uncertainty about their role within the team made this more challenging. In contrast, community nurses were routinely involved in both active treatment and palliation care phases. There was little evidence of collaboration between the specialist and primary care professionals involved. There was considerable variation in out of hours provision across cases. Conclusions. Engaging primary care practitioners needs to be more actively anticipated and negotiated at the transition to palliation. Variation in out of hours care is another cause for concern. Enhancing inter-professional collaboration and planning during both active and palliative care phases may help. Keywords. Cancer, family medicine, palliative care, paediatric.

Using Social Worlds Theory to Explore Influences on Community Nurses’ Experiences of Providing Out of Hours Paediatric Palliative Care

Abstract Background: Paediatric oncology palliative care in the community is rare and nationally there is a lack of standardisation of out of hours nursing service provision. Objectives: This paper seeks to explore influences on the experiences of paediatric nurses providing out of hours palliative care within the family home to children with cancer. The study used social worlds theory to aid identification and demonstration of the findings. Methods: Twelve community-based palliative cases were purposively selected from children with cancer treated at one regional centre. Tape-recorded interviews were undertaken with 54 health professionals (general practitioners, community nurses and allied health professionals) involved in providing their palliative care and five facilitated case discussions completed. Data analysis followed a grounded theory approach; chronological comparative data analysis identifying generated themes. Social worlds theory was used as a framework to examine the data. Results: Nurses’ experiences are shaped by their social world and those of the nursing team,child and family and the inter-professional team providing the care. The lack of a formalised service, sub-optimal inter-professional working and impact of social worlds influence the experience of the nurse. Conclusions: Social worlds theory provided a new perspective in understanding these experiences based within a paediatric palliative care setting, knowledge that can be used to inform service provision.

What do GPs and Bereaved Parents Think About Paediatric Oncologists and Palliative Care?

Aim The aim of the study was to examine the experiences of bereaved parents and general practitioners (GPs) following the death of a child with cancer within the family home. This presenta-tion focuses on one of the findings; the parent and GP views on the hospital consultants’ involvement in the palliative care. Design A community based qualitative study.Setting West Midlands region, UK. Participants Purposeful sample of 18 GPs and 11 bereaved families. The sample was drawn from the families and GPs of children who had been treated for cancer at a regional childhood cancer centre and who subsequently died within the family home. Methods One-to-one semi-structured tape-recorded interviews were undertaken with GPs and bereaved parents following the death at home of a child with cancer. GPs were contacted three months after the death of the child and the parents at six months. Thematic analysis of the transcriptions was undertaken. Findings Parents described feeling abandoned at the transition to palliation when management of care transferred to the GP. Families did not perceive a seamless service of medical care between hospital and community. Where offered consultant contact was valued by families and GPs. Text and email were used by families as a means of asking the consultant questions. The GPs lacked role clarity where the consultant continued involvement in the care. Conclusions The transition to palliation and the transfer of care to community services needs to be sensitively and actively man-aged for the family and the GP. Medical care between tertiary andprimary care should be seen as a continuum. Improving GP: consultant communication could aid role clarity, identify mecha-nisms for support and advice, and promote the active engagement of the GP in the care. Exploring opportunities for integrated con-sultant: GP working could maximise mutual learning and support and enhance care provision. The level, access and duration of ongoing contact between consultants and families/GPs require clarity.

Providing Palliative Care for the Child with Cancer: The Experience of GPs

Background Childhood cancers are rare and general practitioners (GPs) have limited experience in caring for these children and even less in providing their palliative care. Most families prefer that their child is cared for at home in the palliative phase of their illness, with professional support from those known to them (Chambers and Oakhill 1995, Vickers and Carlisle 2000, Craft and Killen 2007). A community based qualitative study examined the experiences of ten GPs following their involvement in the care of a child with cancer receiving palliative care within the family home. Methods Data collection was through 1:1 in-depth interviews and facilitated case discussion supported by field notes and grounded theory analysis (chronological comparative data analysis identifying generated themes). Social worlds theory was used as a framework to aid examination, and facilitate critical understanding, of the experiences of the GPs. Findings This presentation focuses on five of the findings relating to the experiences of the GP; the impact of minimal contact; lack of knowledge and experience, uncertain role, out of hours service provision and the emotional toll. Findings highlighted that GPs often have to re-establish their role at the child’s transition to palliative care. Factors hindering the GP in this process include a deficit of specialist knowledge and experience of paediatric palliative care and lack of role clarity. Conclusions/points of interest Strategies for enhancing the role of the Macmillan team in supporting GPs have been identified by this study, such as enhanced collaborative working. Findings have also provided further confirmation of the substantial variation in out of hours medical palliative care provision; with evidence that some GPs work beyond their remit in providing informal out of hours care. This presentation details the findings of one aspect (the experiences of GPs) of a wider study that explored the experiences of 54 community based health professionals (GPs, community nurses and allied health professionals) who had been involved in caring for a dying with cancer receiving palliative care at home (Neilson 2009).

Continuity of care in older adults with multiple chronic conditions

Thesis (Ph.D.)--University of Washington, 2016-08

Saúde oral e cuidados primários em Odontopediatria

Introdução: A cárie dentária é uma doença multifatorial, infeciosa, transmissível e dependente da dieta, que provoca a desmineralização das estruturas dentárias. Devido a esta natureza etiológica multifatorial é fundamental o aumento da sensibilização e educação das crianças e pais, quer por profissionais de saúde, quer pelos professores em ambiente escolar. A aquisição de hábitos de higiene oral e nutricionais adequados pela criança é um fator imperativo para a manutenção de uma boa saúde oral. Objetivos: Avaliação da Saúde Oral e cuidados primários num grupo de crianças e adolescentes pertencentes ao Agrupamento de Escolas de Alijó. Método: A amostra é constituída por 216 alunos do Agrupamento de Escolas de Alijó, agrupados em três escalões etários: 6-9 anos, 10-14 anos e 15-16 anos. Foi realizada uma observação oral com base no índice de higiene oral simplificado e no índice de cárie (CPOd/cpod- Dentes Cariados, Perdidos e Obturados). Após esta observação foi aplicado um questionário escrito sobre diversos temas relacionados com a saúde oral. Resultados: A percentagem de crianças livres de lesões cariosas aos 6, 12 e 15 anos foi de 33,3%, 28,4% e 16,2%, respetivamente. Os valores da média de número de escovagens diárias aumentam de acordo com a faixa etária. O número de escovagens médias aos 6-9anos, 10-14anos e 15-16anos foi 1,37; 1,48 e 1,55 no sexo masculino, no caso de sexo feminino estes valores passam para 1,58; 1,80 e 1,89 respetivamente. Discussão: Os números registados no presente estudo são semelhantes aos do I Estudo Nacional de Prevalência da Cárie Dentária, onde se verificou percentagens de 33%, 27% e 18,9% para os escalões referentes aos 6 anos, 9 anos e 15 anos. Existe uma melhoria significativa em cada um destes escalões nos dois estudos seguintes realizados pela DGS. Em 2008 estas percentagens foram de 51%, 44% e 28%, respetivamente para cada um dos escalões. Em 2015 existiu apenas um pequeno acréscimo, com percentagens registadas de 54,8%, 53% e 32,4%, respetivamente. A última percentagem, de 32,4%, refere-se neste caso ao escalão dos 18 anos, uma vez que a DGS substituiu o escalão de estudo dos 15 anos de idade. Quando nos referimos ao número de escovagens médio, os números registados neste estudo têm uma evolução semelhante aos encontrados no III Estudo Nacional de Prevalência da Cárie Dentária, publicado em 2015 pela DGS, que refere que aos 6 anos 53% dos inquiridos escova duas vezes ao dia e 25,7% apenas uma vez, enquanto que aos 12 anos nos deparamos com uma descida para 19,9% dos que escovam 1x por dia e um aumento para 69,9% dos que escovam duas vezes. O mesmo estudo afirma ainda que as jovens escovam mais vezes os dentes, tal como no presente estudo. Conclusão: Os últimos anos têm-se revelado determinantes na melhoria da Saúde Oral dos portugueses e a aposta na prevenção, nomeadamente nos Cuidados Primários de Saúde Oral tem apresentado uma mais-valia inquestionável. Como em todos os percursos que se iniciam, a monitorização dos resultados e a sua melhoria contínua podem conduzir à otimização das estratégias e no seu conjunto contribuir para fazer ainda mais e melhor. Este estudo permitiu aferir, que a realidade, em contextos de Saúde Oral, no Concelho de Alijó é preocupante sugerindo que existem assimetrias em Portugal e cabe a todos os intervenientes em Saúde Oral diminuí-las. O envolvimento de cada Médico Dentista neste processo é fundamental.

O cuidado de enfermagem à criança e ao adolescente vítima de queimaduras: implicações para a prática da enfermagem

Objetivou-se conhecer as implicações do cuidado à criança e ao adolescente vítimas de queimaduras para a prática da enfermagem. Realizou-se uma pesquisa descritiva e exploratória com abordagem qualitativa. Participaram dez profissionais da equipe de enfermagem de um Centro de Referência a Pacientes Queimados do sul do Brasil. Os dados foram coletados no segundo semestre de 2012 por meio de entrevistas semiestruturadas e analisados pela técnica de Análise de Conteúdo. Em relação aos sentimentos frente ao cuidado verificou-se que esses vivenciam ansiedade e tensão frente à dor do paciente, têm a sensação de doação querendo “fazer mais”, tristeza e abalo, sensação de utilidade e de competência ao ver os efeitos do cuidado, impotência por não terem controle sobre a situação vivenciada, revolta e raiva por não compreenderem o porquê este acidente aconteceu e pena dos pacientes e de seus familiares devido o seu sofrimento. Como facilidades para o cuidado referiram a ajuda mútua entre os membros da equipe aliada ao tempo de atuação no setor, o desenvolvimento de um bom relacionamento com a família da criança / adolescente, a sinceridade da criança ao manifestar seus sentimentos, uma identificação e afinidade maior para cuidar crianças e adolescentes e o adolescente ser mais aberto e entender com facilidade a linguagem utilizada no setor. Referiram como dificuldades à falta de preparo e a pouca habilidade para cuidar de crianças/ adolescentes com dor, o desconhecimento acerca do paciente, a falta de habilidades técnicas para realizar procedimentos em crianças/ adolescentes, lidar com o familiar, lidar com a necessidade de manipular o corpo do adolescente, comunicar-se com crianças que não sabem expressar-se, pacientes que não falam o português e adolescentes que possuem linguagem própria, explicar para o paciente a magnitude do trauma sofrido e conversar com esses acerca das sequelas, deformidades e limitações com as quais terão que (con)viver. Quanto às estratégias para se instrumentalizar para o cuidado utilizam a leitura sobre queimaduras e curativos, leituras de materiais de outras áreas da saúde, uso de técnicas de abordagem e interação com pacientes e familiares, a prática diária no setor e a busca de apoio na equipe e na instituição, realizando atividades de educação continuada. Quanto às estratégias utilizadas para cuidar referiram o estabelecimento de vínculo e de uma relação dialógica, o uso de brincadeiras e atividades lúdicas, o fornecimento de apoio, a introdução da família no processo de cuidado, o uso da criatividade, a valorização do aspecto psicológico do paciente, a adaptação do cuidado de acordo com a faixa etária do paciente e o uso da escuta atenta e sensível. A partir dos dados concluiu-se que o cuidado de enfermagem a crianças e adolescentes vítimas de queimaduras é complexo bem como causador de impacto para os profissionais atuantes em Centros de Queimados. Acredita-se que o estudo possibilitará discutir e refletir acerca da prática profissional da enfermagem no Centro de Queimados frente ao cuidado à criança e ao Adolescente vítima de queimaduras.

Perspective of nurses involved in an action-research study on the changes observed in care provision: results from a focus group

Background According to the Nursing Role Effectiveness Model, the structural components (nurses, patients, organizational variables) may directly BMC Health Services Research 2016, Volume 16 Suppl 3 Page 41 of 132 or indirectly influence the care outcomes through the process (actions developed by the nurses). Objectives: To identify the changes that, from the nurses' perspective, occurred during the provision of care to patients with peripheral venous catheters (PVCs) between the first and the second phase of the Action-Research (AR) study, and the components that influenced these changes. Methods During the second phase of the AR study (December, 2011), a focus group composed of six nurses was held at a medicine unit of a central hospital. A script was used with six open-ended questions. All ethical procedures were followed. Results Positive changes in nursing care provision to patients with PVCs were identified related to the type of dressing used, patient monitoring, aseptic care, and infusion rate. The nurses believed that some variables of the organizational component influenced those changes, such as the centralization of the material used for catheterization or the availability of materials, such as transparent dressings. The nurses also valued the following aspects: knowledge of the research findings of the first phase; training sessions on the topic; and, above all, the nurses' engagement throughout the process of change in care provision. Conclusions Considering the model of analysis used, we found that the changes identified in nursing care resulted from several factors, with the engagement of the professionals themselves in the change process being considered a key aspect.