Understanding informal kinship care: a critical narrative review of theory and research

Many children are cared for on a full-time basis by relatives or adult friends, rather than their biological parents, and often in response to family crises. These kinship care arrangements have received increasing attention from the social science academy and social care professions. However, more information is needed on informal kinship care that is undertaken without official ratification by welfare agencies and often unsupported by the state. This article presents a comprehensive, narrative review of international, research literature on informal, kinship care to address this gap. Using systematic search and review protocols, it synthesises findings regarding: (i) the way that informal kinship care is defined and conceptualised; (ii) the needs of the carers and children; and (iii) ways of supporting this type of care. A number of prominent themes are highlighted including the lack of definitional clarity; the various adversities experienced by the families; and the requirement to understand the interface between formal and informal supports. Key messages are finally identified to inform the development of family friendly policies, interventions, and future research.

An evaluation of palliative care services for cancer patients in the Southern Health and Social Services Board of Northern Ireland.

An interview study of 55 lay carers of people who died from cancer in the Southern Board of Northern Ireland was undertaken using a combination of closed-format and open-ended questions. The aim of the study was to evaluate palliative care services delivered in the last six months of their lives to cancer patients who died either at home or in hospital. Two-thirds of the deaths (36) occurred in the domestic home, 45 of the deceased were admitted as hospital inpatients, and the great majority were in receipt of community nursing (53) and general practitioner (54) services. Open-ended questions were used to allow respondents to give their views about services in some detail and their views about good and bad aspects of services were sought. While they were generally satisfied with services specific areas of difficulty were identified in each aspect of care addressed by the study. The most favourable assessments were made of community nursing with the greatest number of negative comments being made about inpatient hospital care. Differing interests between some of those who were dying and their lay carers were found in two areas: the receipt of help from nonfamily members and the information that the deceased received about their terminal status.

Effects of a book gifting programme on literacy outcomes for foster children: A randomised controlled trial evaluation of the Letterbox Club in Northern Ireland

The poor educational outcomes of children in care is a significant concern internationally. Whilst there have been many interventions developed to address this problem, very few of these have been rigorously evaluated. This article presents the findings of a randomised controlled trial that sought to measure the effectiveness of a book gifting programme (the Letterbox Club) that aims to improve literacy skills amongst children aged 7-11 years in foster care. The programme involves children receiving six parcels of books sent through the post over a six-month period. The trial, which ran between April 2013 and June 2014, involved a sample of 116 children in Northern Ireland (56 randomly allocated to the intervention group and 60 to a waiting list control group). Outcome measures focused on reading skills (reading accuracy, comprehension and rate) and attitudes to reading and school. The trial found no evidence that the book-gifting programme had any effect on any of the outcomes measured. Drawing upon some of the emergent themes from the accompanying qualitative process evaluation that sought to determine foster carer/child attitude towards and engagement with the parcels, it is suggested that one plausible reason for the ineffectiveness of the Letterbox Club, as intimated by carers and children (rather than explicitly explored with them), is the lack of support provided to the carers/children in relation to the packs received. Reflective of an ecological model of children’s development, it is recommended that for book-gifting programmes to be effective they need to include a focus on encouraging the direct involvement of foster carers in shared literacy activities with the children using the books that are gifted.

“CAPACITAR O DOENTE ONCOLÓGICO COM DOENÇA AVANÇADA E/OU O CUIDADOR PARA A GESTÃO DA DOR EM DOMICÍLIO” “EMPOWER THE ONCOLOGIC PATIENT WITH ADVANCED DISEASE AT HOME AND/OR THE CAREGIVER FOR THE MANAGEMENT OF PAIN”

RESUMO ABSTRACT Comunicações orais e Posters Oral communications and posters Este formulário, após preenchido, e aceites as condições descritas no regulamento das Comunicações orais e Posters deve ser enviado para isnr@porto.ucp.pt After complete this form and accept the conditions described in the oral communications and posters regulation, please sent to isnr@porto.ucp.pt Tipo de comunicação (comunicação oral ou poster): Comunicação oral Type of communication: (oral communication or poster): Oral comunication Título (Title): “CAPACITAR O DOENTE ONCOLÓGICO COM DOENÇA AVANÇADA E/OU O CUIDADOR PARA A GESTÃO DA DOR EM DOMICÍLIO” “EMPOWER THE ONCOLOGIC PATIENT WITH ADVANCED DISEASE AT HOME AND/OR THE CAREGIVER FOR THE MANAGEMENT OF PAIN” Autoria (Authors): CORREIA, Isabel* (doutoranda em Enfermagem na Universidade de Lisboa) LOPES, Manuel (orientador do projeto) Afiliação dos autores (Authors affiliation): – Professora adjunta na Universidade de Évora, Escola Superior de Enfermagem de São João de Deus de Évora, doutoranda em enfermagem Universidade de Lisboa - – Professor Doutor em Enfermagem, Diretor da Escola Superior de Enfermagem de São João de Deus de Évora, Universidade de Évora E-mail: icorreia@uevora.pt - 964078445 mjl@uevora.pt Resumo (3000 caracteres com espaços) INTRODUÇÃO Um dos sintomas mais frequentes no doente oncológico com doença avançada é a dor. Segundo Palliative Care in European, a dor oncológica, tem uma importância especial porque o cancro é a segunda causa de morte em Portugal e por existir dor moderada a intensa em mais de 90% dos doentes em situação oncológica terminal. O desenvolvimento de um programa estruturado de intervenção de enfermagem que vá de encontro às necessidades do doente oncológico com doença avançada e/ou cuidador, relativamente à gestão da dor, poderá ter um impacto muito significativo no controlo da dor e de outros sintomas. OBJETIVOS Avaliar o efeito de um programa de Intervenção de Enfermagem na capacidade de gestão da dor por parte do doente oncológico com doença avançada e/ou o cuidador em domicílio. MATERIAIS E MÉTODOS A implementação do programa tem a duração prevista para 6 semanas. Compreende duas sessões educativas, três telefonemas e uma sessão de avaliação final. O programa foi elaborado, após uma Revisão sistemática de Literatura, com base no programa “ THE PRO-SELF”, nas Orientações Genéricas preconizadas pelo Plano Nacional de Luta Contra a dor e na Intervenção de enfermagem “Controle da Dor” da Nursing Intervention Classification (NIC). RESULTADOS O projeto encontra-se na fase de implementação e avaliação do programa educativo. No início os doentes não apresentam informação relativamente à gestão da dor, no final demonstram capacidade para a monitorização da dor e de outros sintomas e para a gestão da terapêutica, realizando os registos num diário de bordo. A literacia, a situação clínica e a disponibilidade interferem na capacidade de gestão. A proximidade da morte e a alteração do estado de consciência interferem na autonomia e na tomada de decisão. CONCLUSÃO Em fase de colheita e análise de dados. REFERÊNCIAS BIBLIOGRÁFICAS 1. FREIXO, Manuel. Metodologia Cientifica - Fundamentos, Metodos e Tecnicas. s.l. : Piaget, 2011. 2. Bulechek, Gloria M. e etal. Classificaçaõ das Intervenções de Enfermagem (NIC). Rio de Janeiro : elsevier, 2010. 3. Tsigaroppoulos, T. e etal. Problems faced by relatives caring for cancer patients at home. International Journal Of Nursing Practice. 15, 2009, Vol. 1, Nursing Pratice. 4. west, C.:Dodd,M., et al. Pain Control Program-an effective approach for cancer pain management. Oncology Nursing Forum. 1, 2003, Vol. 30, Oncology Nursing. 5. NR/rdonlyres/6861126B-C57A-46E1-B065-316C0CF8DACD/0/ControlodaDor.pdf, . (2008). . Consultado em 30 de Novembro de 2012 a partir de. Direcção-Geral da Saúde . http://www.portaldasaude.pt. [Online] 2008. [Citação: 30 de Novembro de 2012.] http://www.portaldasaude.pt/NR/rdonlyres/6861126B-C57A-46E1-B065-316COCF8DACD/0/Controlodador.pdf . Abstract (3000 characters with spaces) INTRODUCTION One of the most frequent symptoms in oncological patient with advanced disease is pain. According to Palliative Care in European, oncological pain, has a special importance because the cancer is the second most common cause of death in Portugal and there is moderate to severe pain in more than 90 % of patients in oncological terminal situation. The development of a structured program of nursing intervention that will meet the needs of the oncological patient with advanced disease and/or caregiver at home on pain management, will be able to provide for the management of pain, increasing knowledge for the control of pain while minimizing the associated symptoms that influence the quality of life of the patient and the caregiver's anxiety. PURPOSE/GOAL/AIM To evaluate the effect of an educational program of Nursing Intervention on pain management by the oncological patient with advanced disease and/or caregiver. RESEARCH/PROBLEM What is the effect of a structured program of nursing intervention directed to the patient and/or oncological patient caregiver with advanced disease at home, in the management of pain? METHODOLOGY Almost experimental study, with assessment of the management capacity of the oncological patient pain with advanced disease at home and/or informal caregiver, before and after the intervention of nursing (educational program) and transverse evaluation throughout the study. Population: oncological patients with advanced disease at home, with more than 18 years, and or family caregiver, attending an Oncology Unit – Hospital during the day. RESULTS Made an application in an Oncology service in oncological patients with advanced disease at home, it was found that at the beginning the patients did not present information regarding pain management, at the end demonstrated capacity for monitoring of pain and other symptoms and therapeutic management, performing a logbook records. CONCLUSION In the process of collection and analysis of data. KEYWORDS Educational Program; oncological patient; oncological pain.

How has the Personalisation of Social Care Impacted on Service Users with Dementia?

The personalisation agenda is a government initiative aimed at transforming adult social care through giving service users choice and control over the care they receive. A key part of this agenda is the provision of direct payments; cash payments made to individuals eligible for social care services which allow them to manage their own care. Research suggests that direct payments can enable people with dementia to stay in their own home for longer and experience greater choice, flexibility and an improved social life. However very few people with dementia currently access direct payments. The objective of this research was to explore the social care experiences of people with dementia in relation to their access to and use of direct payments. 26 semi-structured interviews were conducted with people with dementia in receipt of social care services in the community, and their carers and social workers, and focus groups held with two community social work teams. It was found that direct payments tended to be seen as a fall-back option, for example as the only alternative to residential care, or as a solution to problems with traditional services. Direct payments appeared to afford particular benefits to people with dementia in terms of flexibility, continuity of care and access to local facilities. It is therefore important that this group are enabled to access direct payments. The second (ongoing) phase of this research comprises the design and pilot testing of an intervention aimed at improving access to direct payments by people with dementia.

FITS into Practice: Translating Research into Practice in Reducing the Use of Anti-psychotic Medication for People with Dementia Living in Care Homes

Objectives: This paper reports on the acceptability and effectiveness of the FITS (Focussed Intervention Training and Support) into Practice Programme. This intervention was scaled up from an earlier cluster randomised-controlled trial that had proven successful in significantly decreasing antipsychotic prescribing in care homes. Method: An in depth 10-day education course in person-centred care was delivered over a three-month period, followed by six supervision sessions. Participants were care-home staff designated as Dementia Care Coaches (DCCs) responsible for implementing interventions in 1 or 2 care homes. The course and supervision was provided by educators called Dementia Practice Development Coaches (DPDCs). Effectiveness data included monitoring antipsychotic prescriptions, goal attainment, knowledge, attitudes and implementation questionnaires. Qualitative data included case studies and reflective journals to elucidate issues of implementation. Results: Of the 100 DCCs recruited, 66 DCCs completed the programme. Pre-post questionnaires demonstrated increased knowledge and confidence and improved attitudes to dementia. Twenty per cent of residents were prescribed antipsychotics at baseline which reduced to 14% (31% reduction) with additional dose reductions being reported alongside improved personalised goal attainment. Crucial for FITS into Practice to succeed was the allocation and protection of time for the DCC to attend training and supervision and to carry out implementation tasks in addition to their existing job role. Evaluation data showed that this was a substantial barrier to implementation in a small number of homes. Discussion and conclusions: The FITS into practice programme was well evaluated and resulted in reduction in inappropriate anti-psychotic prescribing. Revisions to the intervention are suggested to maximise successful implementation.

Bioluminescent sensor proteins for point-of-care therapeutic drug monitoring.

For many drugs, finding the balance between efficacy and toxicity requires monitoring their concentrations in the patient's blood. Quantifying drug levels at the bedside or at home would have advantages in terms of therapeutic outcome and convenience, but current techniques require the setting of a diagnostic laboratory. We have developed semisynthetic bioluminescent sensors that permit precise measurements of drug concentrations in patient samples by spotting minimal volumes on paper and recording the signal using a simple point-and-shoot camera. Our sensors have a modular design consisting of a protein-based and a synthetic part and can be engineered to selectively recognize a wide range of drugs, including immunosuppressants, antiepileptics, anticancer agents and antiarrhythmics. This low-cost point-of-care method could make therapies safer, increase the convenience of doctors and patients and make therapeutic drug monitoring available in regions with poor infrastructure.

Évaluation d'une structure gériatrique entre l'ambulatoire et l'hospitalier [Geriatric institutions, between ambulatory and hospital care: patients' description and performance assessment].

Introduction : Décrire les patients d'une structure gériatrique offrant des hospitalisations de courte durée, dans un contexte ambulatoire, pour des situations gériatriques courantes dans le canton de Genève (Suisse). Mesurer les performances de cette structure en termes de qualité des soins et de coûts. Méthodes : Des données relatives au profil des 100 premiers patients ont été collectées (huit mois), ainsi qu'aux prestations, aux ressources et aux effets (réadmissions, décès, satisfaction, complications) de manière à mesurer différents indicateurs de qualité et de coûts. Les valeurs observées ont été systématiquement comparées aux valeurs attendues, calculées à partir du profil des patients. Résultats : Des critères d'admission ont été fixés pour exclure les situations dans lesquelles d'autres structures offrent des soins mieux adaptés. La spécificité de cette structure intermédiaire a été d'assurer une continuité des soins et d'organiser d'emblée le retour à domicile par des prestations de liaison ambulatoire. La faible occurrence des réadmissions potentiellement évitables, une bonne satisfaction des patients, l'absence de décès prématurés et le faible nombre de complications suggèrent que les soins médicaux et infirmiers ont été délivrés avec une bonne qualité. Le coût s'est révélé nettement plus économique que des séjours hospitaliers après ajustement pour la lourdeur des cas. Conclusion : L'expérience-pilote a démontré la faisabilité et l'utilité d'une unité d'hébergement et d'hospitalisation de court séjour en toute sécurité. Le suivi du patient par le médecin traitant assure une continuité des soins et évite la perte d'information lors des transitions ainsi que les examens non pertinents. INTRODUCTION: To describe patients admitted to a geriatric institution, providing short-term hospitalizations in the context of ambulatory care in the canton of Geneva. To measure the performances of this structure in terms of quality ofcare and costs. METHOD: Data related to the clinical,functioning and participation profiles of the first 100 patients were collected. Data related to effects (readmission, deaths, satisfaction, complications), services and resources were also documented over an 8-month period to measure various quality and costindicators. Observed values were systematically compared to expected values, adjusted for case mix. RESULTS: Explicit criteria were proposed to focus on the suitable patients, excluding situations in which other structures were considered to be more appropriate. The specificity of this intermediate structure was to immediately organize, upon discharge, outpatient services at home. The low rate of potentially avoidable readmissions, the high patient satisfaction scores, the absence of premature death and the low number of iatrogenic complications suggest that medical and nursing care delivered reflect a good quality of services. The cost was significantly lower than expected, after adjusting for case mix. CONCLUSION: The pilot experience showed that a short-stay hospitalization unit was feasible with acceptable security conditions. The attending physician's knowledge of the patients allowed this system tofocus on essential issues without proposing inappropriate services.

Foster Children in Education: Resource Handbook for Elementary Educators

This project is aligned with examining the role of the education system and the foster care context on the learning experiences of young children in the classroom. This project is a study of the literature and research conducted on the life experiences, adverse effects of these experiences (such as attachment disorder), socioemotional development, and resiliency of foster care children. Furthermore, the project explores the literature on how the experiences of these foster children traverse contexts and impact the education setting. This study also outlines specific strategies and practices for teachers and school staff in order to promote students’ resiliency, competency, behaviour management, and overall educational success and positive academic experience. These strategies resulted from a critical review of the literature and translated into the development of an informative handbook intended for teachers. The handbook developed in this study focuses on the understanding of the lives of foster care children, their histories, adverse experiences, socioemotional development, strategies to manage behaviour, unique needs, and encouraging their resiliency and success in school. To ensure the soundness of the handbook, 2 education liaisons at a Family and Child Services agency within Ontario and a former child and service social worker from Manitoba reviewed the first draft and provided comments on the validity of the content and the potential usability of the handbook for educators. Suggestions and comments provided by these experts were used to enhance the final product of the handbook.

Rehabilitation needs for older adults with stroke living at home: perceptions of four populations

The BRAD group is composed of/ Le groupe BRAD est composé de : Sylvie Belleville, Gina Bravo, Louise Demers, Philippe Landreville, Louisette Mercier, Nicole Paquet, Hélène Payette, Constant Rainville, Bernadette Ska and René Verreault.

Aspects méthodologiques, mesure et facteurs associés à l’autonomie des patients utilisant les technologies de dialyse péritonéale à domicile

La dialyse péritonéale (DP) est une thérapie d’épuration extra-rénale qui peut se réaliser à domicile par l’entremise d’une technologie. Elle exige, du patient certaines aptitudes, (motivation et compétence) et de l’équipe de soins, une organisation particulière pour arriver à une autonomie d’exécution de l’épuration. Dans un contexte de thérapie à domicile, comme celui de la dialyse péritonéale, le niveau d’autonomie des patients ainsi que les facteurs qui y sont associés n’ont pas été examinés auparavant. C’est l’objet de cette thèse. En se fondant sur la théorie de l’autodétermination et sur une revue de la littérature, un cadre conceptuel a été développé et fait l’hypothèse que trois types de facteurs essentiels pourraient influencer l’autonomie. Il s’agit de facteurs individuels, technologiques et organisationnels. Pour tester ces hypothèses, un devis mixte séquentiel, composé de deux volets, a été réalisé. Un premier volet qualitatif - opérationnalisé par des entrevues auprès de 12 patients et de 11 infirmières - a permis, d’une part, d’explorer et de mieux définir les dimensions de l’autonomie pertinente dans le cadre de la DP; d’autre part de bonifier le développement d’un questionnaire. Après validation, ce dernier a servi à la collecte de données lors du deuxième volet quantitatif et alors a permis d’obtenir des résultats auprès d’un échantillon probabiliste (n =98), tiré de la population des dialysés péritonéaux du Québec (N=700). L’objectif de ce deuxième volet était de mesurer le degré d’autonomie des patients, d’examiner les associations entre les facteurs technologiques, organisationnels ainsi qu’individuels et les différentes dimensions de l’autonomie. Des analyses univariées et multivariées ont été réalisées à cet effet. Les résultats obtenus montrent que quatre dimensions d’autonomie sont essentielles à atteindre en dialyse à domicile. Il s’agit de l’autonomie, sur le plan clinique, technique, fonctionnel (liberté journalière) et organisationnel (indépendance par rapport à l’institution de soins). Pour ces quatre types d’autonomie, les patients ont rapporté être hautement autonomes, un résultat qui se reflète dans les scores obtenus sur une échelle de 1 à 5 : l’autonomie clinique (4,1), l’autonomie technique (4,8), l’autonomie fonctionnelle (4,1) et l’autonomie organisationnelle (4,5). Chacun de ces types d’autonomie est associé à des degrés variables aux trois facteurs du modèle conceptuel : facteurs individuels (motivation et compétence), technologique (convivialité) et organisationnels (soutien clinique, technique et familial). Plus spécifiquement, la motivation serait associée à l’autonomie fonctionnelle. La convivialité serait associée à l’autonomie clinique, alors que la myopathie pourrait la compromettre. La convivialité de la technologie et la compétence du patient contribueraient à une meilleure autonomie organisationnelle. Quant à l’autonomie sur le plan technique, tous les patients ont rapporté être hautement autonomes en ce qui concerne la manipulation de la technologie. Ce résultat s’expliquerait par une formation adéquate mise à la disposition des patients en prédialyse, par le suivi continu et par la manipulation quotidienne pendant des années d’utilisation. Bien que dans cette thèse la technologie d’application soit la dialyse péritonéale, nous retenons que lorsqu’on transfère la maîtrise d’une technologie thérapeutique à domicile pour traiter une maladie chronique, il est primordial d’organiser ce transfert de telle façon que les trois facteurs techniques (convivialité), individuels (motivation, formation et compétence), et organisationnels (soutien de l’aidant) soient mis en place pour garantir une autonomie aux quatre niveaux, technique, clinique, fonctionnel et organisationnel.