Vivências do pai/ acompanhante no processo da hospitalização do filho

The presence of the man with the hospitalized child is still insignificant and the relationships established in hospitals culminate in several situations that can to influence his experience. The study aimed to analyze the experiences of the parent / caregiver during the hospitalization of their child. In intention to develop the research, it was conducted an exploratory and descriptive qualitative research approach, developed with 11 fathers who accompanied sick childen at the Paediatric Hospital in metropolitan area of Natal, Rio Grande do Norte, Brazil. As inclusion criteria men should be aged 18 years; have favorable emotional conditions to answer the questions are be accompanying his child aged between one to five years old in clinical or surgical. Data collection occurred in March and April 2014, using an interview script. This step prior to the approval of the Health Department of state of Rio Grande do Norte, approved by Universidade Federal do Rio Grande do Norte Committee on Ethics in Research by Certificate of Presentation and Ethics Consideration No. 22821513.1.0000.5537. The data treatment occurred following the content analysis method in thematic modality proposed by Bardin. According to statements the following categories emerged: "The presence of the father in the hospitalization of a child" and "Responsibilities and parental attitudes the hospitalization of a child”, which were analyzed and discussed based on the literature on the family in the hospitalization of the child and considerations about the care of the child. It was founded that the respondents the experienced institutionalization son were inserted in a context of active participation of tasks and sharing responsibilities. Thus it was considered in the study the need of enforcing rights of the father as a family entity in practice of them child care instead of social and gender issues that are still strongly rooted in contemporary society. Given this, it is necessary that the nursing staff consider the various situations faced by man during infant hospitalization with the first fruits of this approach to the care of the son process minimizing the sequelae stemming from being away from the family nucleus

Práticas pedagógicas e inclusão escolar: o processo de ensino-aprendizagem de alunas com deficiência intelectual

This research aimed to know and analyze the pedagogical practices that have been developed in the teaching and learning of students with Intellectual Disability (DI), enrolled at common class of elementary school I. The study was conducted in a public school at Natal/RN, involving two students with DI, a multipurpose teacher, a teaching assistant, a teacher of arts and educational coordinator. As for methodological choice, we chose to develop a qualitative study, undertaking a case study. As tools for the construction of the data we use: semi-structured interviews, participant observation, field diary and document analysis. Data analysis reveals that the institution in which the research was undertaken gradually implementing changes in order to develop an inclusive practice, consistent with its assumptions. Regarding the practices developed in the teaching and learning of students with intellectual disabilities, it was possible to realize the fulfillment of certain adjustments in relation to the objectives, activities and some content, involving the use of resources and varied strategies. With regard to educational activities, we found that these had different levels of complexity, covering both basic goals as more complex objectives. From the observations, we realize that the Assistant Professor of mediations during varied activities as challenging tool in intellectual processes. We note, too, a dynamic classroom in which disabled students were under the guidance of Assistant Professor, and other students with all-round teacher who had a fairly traditional teaching methodology. It created thus an isolation situation, since there was no proposition practices to be developed with all students, and interaction among classmates, generally quite restricted. Although were highlighted developments in the social and academic learning of the surveyed students, the teachers said they did not feel prepared to work freight inclusion. The study reveals the need for teachers reviewing some actions undertaken, in order to develop more democratic pedagogical practices of education, stimulating the interactions between students, by proposing challenging activities that promote the formation and concepts. In addition, it points to the need of the education system invest and encourage the qualification of teachers with regard to education in an inclusive perspective, through actions that promote lifelong learning. It needs to be developed on the teacher a reflective attitude, resulting in a view that due diligence must be entered in practice inherent in teaching in order to use to enhance their educational experience.

Práticas pedagógicas e inclusão escolar: o processo de ensino-aprendizagem de alunas com deficiência intelectual

This research aimed to know and analyze the pedagogical practices that have been developed in the teaching and learning of students with Intellectual Disability (DI), enrolled at common class of elementary school I. The study was conducted in a public school at Natal/RN, involving two students with DI, a multipurpose teacher, a teaching assistant, a teacher of arts and educational coordinator. As for methodological choice, we chose to develop a qualitative study, undertaking a case study. As tools for the construction of the data we use: semi-structured interviews, participant observation, field diary and document analysis. Data analysis reveals that the institution in which the research was undertaken gradually implementing changes in order to develop an inclusive practice, consistent with its assumptions. Regarding the practices developed in the teaching and learning of students with intellectual disabilities, it was possible to realize the fulfillment of certain adjustments in relation to the objectives, activities and some content, involving the use of resources and varied strategies. With regard to educational activities, we found that these had different levels of complexity, covering both basic goals as more complex objectives. From the observations, we realize that the Assistant Professor of mediations during varied activities as challenging tool in intellectual processes. We note, too, a dynamic classroom in which disabled students were under the guidance of Assistant Professor, and other students with all-round teacher who had a fairly traditional teaching methodology. It created thus an isolation situation, since there was no proposition practices to be developed with all students, and interaction among classmates, generally quite restricted. Although were highlighted developments in the social and academic learning of the surveyed students, the teachers said they did not feel prepared to work freight inclusion. The study reveals the need for teachers reviewing some actions undertaken, in order to develop more democratic pedagogical practices of education, stimulating the interactions between students, by proposing challenging activities that promote the formation and concepts. In addition, it points to the need of the education system invest and encourage the qualification of teachers with regard to education in an inclusive perspective, through actions that promote lifelong learning. It needs to be developed on the teacher a reflective attitude, resulting in a view that due diligence must be entered in practice inherent in teaching in order to use to enhance their educational experience.

End-of-life care in Ireland: ethical challenges and solutions. Opening Statement to the Houses of the Oireachtas Joint Committee on Health and Children, 24 October 2013.

Children Report on End of Life and Palliative Care in Ireland, Volume 1.

Development of Independent Living Skills in Project Panther LIFE Students during the Summer Residential Program

Project Panther LIFE: Panther Learning Is For Everyone is an ongoing collaborative partnership between Florida International University (FIU), Miami-Dade County Public Schools (M-DCPS), and Parent to Parent of Miami, Inc. to develop, implement, support, and expand a non-degree postsecondary transition program for students with intellectual disabilities (ID). In Summer 2014, the program launched its first on-campus three-week Summer Residential Program (SRP) which focused on the development of independent living skills and self-determination skills An overview of the SRP components, program support systems, and benefits of the experience will be given through the perspective of key personnel, partnerships, and students.

Validación de dos herramientas para la evaluación de cambios en las actitudes de alumnos en situaciones frecuentes en cuidado paliativo

Objective: To determine the psychometric properties of two scales designed to examine attitudes regarding palliative care: Comfort Scale in Palliative Care (CSPC, Pereira et al.) and Tanatophobia Scale (TS, Merrill et al.)Method: Seventy-seven students who completed an online course on psychosocial aspects of palliative care offered by the Latin American Association of Palliative Care participated in the study. They also completed the scales before and after the course. Construct validity and reliability of the CSPC and the TS were assessed using a Principal Components Analysis, internal reliability coefficient and test-retest reliability. Further, comparative statistics between the pre-course and post-course results were obtained in order to determine changes in attitudes.Results: The Principal Components Analysis showed satisfactory fit to the data. 3 components were extracted: two for the CSPC and one for the TS, which explained 55.37% of the variance. Internal consistency coefficients were satisfactory in all cases and Cronbach´s Alphas were satisfactory for all the scales, particularly for the CSPC. Test-retest reliability in t1 and t2 was found to be non significant, indicating that measures were not related in time. Regarding pre-course/post-course comparisons, significant changes in comfort assisting patients (p = 0.004) and comfort assisting families (p = 0.001) following the course were identified, but changes in thanatophobia were non significant (p > 0.05).Conclusions: both scales are valid and reliable. Attitudes regarding the practice of palliative care and how they change, particularly regarding psychosocial issues, can be accurately measured using the examined scales.

Arteterapia en el final de la vida

El arteterapia permite una aproximación creativa biográfica particularmente valiosa en la etapa final de la vida. La persona enferma presenta múltiples necesidades – físicas, emocionales, sociales y espirituales – que solo una atención holística puede pretender abarcar, tal como lo contempla la filosofía de los cuidados paliativos. El arteterapeuta integrado en el equipo interdisciplinar contribuye a aliviar y acompañar el sufrimiento del paciente y su familia. Se presentan aquí las bases teóricas y la metodología de la intervención, así como el marco sanitario en el cual se inscribe.

La música en el desarrollo de la espiritualidad y la religiosidad. Una aproximación al Cristianismo y al Budismo

La música puede afectar al individuo en todos sus niveles –físico, mental y espiritual–. El presente artículo se centra en el papel que ésta desempeña en el desarrollo de la vida espiritual y trascendental. Para ello, realizaremos un repaso histórico de su evolución estética y social, abordaremos dicho fenómeno a nivel fisiológico y presentaremos sus aplicaciones clínicas y sociales. Seguidamente y a modo de ejemplo de las concepciones de pensamiento occidental y oriental, trataremos la forma en que el cristianismo y el budismo conciben la música dentro de su doctrina. Finalizaremos con algunas reflexiones sobre el tema.

A monster that lives in our lives - experiences of caregivers of people with motor neuron disease and identifying avenues for support.

Background A developing body of evidence has provided valuable insight into the experiences of caregivers of people with motor neuron disease; however, understandings of how best to support caregivers remain limited.

Aim This study sought to understand concepts related to the motor neuron disease caregiver experience which could inform the development of supportive interventions.

Design A qualitative thematic analysis of a one-off semistructured interview with caregivers was undertaken.

Setting/participants Caregivers of people with motor neuron disease were recruited from a progressive neurological diseases clinic in Melbourne, Australia.

Results 15 caregivers participated. Three key themes were identified: (1) The Thief: the experience of loss and grief across varied facets of life; (2) The Labyrinth: finding ways to address ever changing challenges as the disease progressed; (3) Defying fate: being resilient and hopeful as caregivers tried to make the most of the time remaining.

Conclusions Caregivers are in need of more guidance and support to cope with experiences of loss and to adapt to changeable care giving duties associated with disease progression. Therapeutic interventions which target these experiences of loss and change are worth investigation.

Providing a ‘whole-of-family’ approach to care: family-focused practices in mental health services

Introduction: Family members including children are all impacted by a family member’s mental illness. Although mental health services are increasingly encouraged to engage in family-focused practice, this is not a well-understood concept or practice in mental health care. Methods: An integrative review using systematic methods was conducted with international literature, with the aim of identifying concepts and practices of family-focused practice in child and youth and adult mental health services. Results: Findings from 40 peer-reviewed literature identified a range of understandings and applications of family-focused practice, including who comprises the ‘family’, whether the focus is family of origin or family of procreation or choice, and whether the context of practice is child and youth or adult. ‘Family’ as defined by its members forms the foundation for practice that aims to provide a whole-of-family approach to care. Six core practices comprise a family focus to care: assessment; psychoeducation; family care planning and goal-setting; liaison between families and services; instrumental, emotional and social support; and a coordinated system of care between families and services. Conclusion: By incorporating key principles and the core family-focused practices into their care delivery, clinicians can facilitate a whole-of-family approach to care and strengthen family members’ wellbeing and resilience, and their individual and collective health outcomes.

UK consensus project on quality in palliative day services: developing a quality indicator set using the RAND/UCLA appropriateness method

Introduction
Evaluating quality of palliative day services is essential for assessing care across diverse settings, and for monitoring quality improvement approaches.

Aim
To develop a set of quality indicators for assessment of all aspects (structure, process and outcome) of care in palliative day services.

Methods
Using a modified version of the RAND/UCLA appropriateness method (Fitch et al., 2001), a multidisciplinary panel of 16 experts independently completed a survey rating the appropriateness of 182 potential quality indicators previously identified during a systematic evidence review. Panel members then attended a one day, face-to-face meeting where indicators were discussed and subsequently re-rated. Panel members were also asked to rate the feasibility and necessity of measuring each indicator.

Results
71 indicators classified as inappropriate during the survey were removed based on median appropriateness ratings and level of agreement. Following the panel discussions, a further 60 were removed based on appropriateness and feasibility ratings, level of agreement and assessment of necessity. Themes identified during the panel discussion and findings of the evidence review were used to translate the remaining 51 indicators into a final set of 27.

Conclusion
The final indicator set included information on rationale and supporting evidence, methods of assessment, risk adjustment, and recommended performance levels. Further implementation work will test the suitability of this ‘toolkit’ for measurement and benchmarking. The final indicator set provides the basis for standardised assessment of quality across services, including care delivered in community and primary care settings.

Reference

• Fitch K, Bernstein SJ, Aguilar MD, et al. The RAND/UCLA Appropriateness Method User’s Manual. Santa Monica, CA: RAND Corporation; 2001. http://www.rand.org/pubs/monograph_reports/MR1269

“There’s a Catch-22”. The complexities of pain management for people with advanced dementia nearing the end of life: a qualitative exploration of physicians’ perspectives

Background: Pain management is a cornerstone of palliative care. The clinical issues encountered by physicians when managing pain in patients dying with advanced dementia, and how these may impact on prescribing and treatment, are unknown. Aim: To explore physicians’ experiences of pain management for patients nearing the end of life, the impact of these on prescribing and treatment approaches, and the methods employed to overcome these challenges. Design: Qualitative, semi-structured interview study exploring: barriers to and facilitators of pain management, prescribing and treatment decisions, and training needs. Thematic analysis was used to elicit key themes. Settings/Participants: Twenty-three physicians, responsible for treating patients with advanced dementia approaching the end of life, were recruited from primary care (n=9), psychiatry (n=7) and hospice care (n=7). Results: Six themes emerged: diagnosing pain, complex prescribing and treatment approaches, side-effects and adverse events, route of administration, importance of sharing knowledge and training needs. Knowledge exchange was often practised through liaison with physicians from other specialties. Cross-specialty mentoring, and the creation of knowledge networks were believed to improve pain management in this patient population. Conclusions: Pain management in end-stage dementia is complex, requiring cross-population of knowledge between palliative care specialists and non-specialists, in addition to collateral information provided by other health professionals and patients’ families. Regular, cost- and time-effective mentoring and ongoing professional development are perceived to be essential in empowering physicians to meet clinical challenges in this area.

STOPPFrail (Screening Tool of Older Persons Prescriptions in Frail Adults with Limited Life Expectancy): Consensus Validation

Background: To validate STOPPFrail, a list of explicit criteria for potentially inappropriate medications (PIMs) in frailer older adults with limited life expectancy. A Delphi consensus survey of an expert panel (n = 17) comprising specialists in geriatric medicine, clinical pharmacology, palliative care, psychiatry of old age, clinical pharmacy and general practice.
Methods: STOPPFrail criteria was initially created by the authors based on clinical
experience and appraisal of the available literature. Criteria were organised according to physiological system. Each criterion was accompanied by an explanation. Panellists ranked their agreement with each criterion on a 5-point Likert scale and invited to provide written feedback. Criteria with a median Likert response of 4/5 (agree/strongly agree) and a 25th centile of ≥4 were included in the final criteria.
Results: Three Delphi rounds were required. All panellists completed all rounds. Thirty criteria were proposed for inclusion; 26 were accepted. No new criteria were added. The first two criteria suggest deprescribing medications with no indication or where compliance is poor. The remaining 24 criteria include lipid-lowering therapies, alpha-blockers for hypertension, anti-platelets, neuroleptics, proton pump inhibitors, H-2 receptor antagonists, anti-spasmodics, theophylline, leukotriene antagonists, calcium supplements, bone anti-resorptive therapy, selective oestrogen receptor modulators, non-steroidal antiinflammatories, corticosteroids, 5-alpha reductase inhibitors, alpha-1 selective blockers, muscarinic antagonists, oral diabetic agents, ACE-inhibitors, angiotensin receptor blockers, systemic oestrogens, multivitamins, nutritional supplements and prophylactic antibiotics. Anticoagulants and anti-depressants were excluded. Despite incorporation of panellists’ suggestions, memantine and acetyl-cholinesterase inhibitors remained inconclusive.
Conclusion: STOPPFrail comprises 26 criteria, which have been judged by broad consensus, to be potentially inappropriate in frailer older patients with limited life expectancy. STOPPFrail may assist in deprescribing medications in these patients.

Soutenir l'autodétermination des personnes présentant une déficience intellectuelle : contribution de la théorie de l'autodétermination

Depuis les années 1980, le développement de l’autodétermination des personnes présentant une déficience intellectuelle (DI) est devenu une priorité dans les interventions qui leur sont offertes. Les agents de socialisation (p.ex., éducateurs, travailleurs sociaux, enseignants, parents, etc.) ont un rôle crucial dans sa promotion de par le soutien qu’ils leur offrent et les apprentissages qu’ils tentent de favoriser chez elles. La façon de communiquer et le type de relation que les agents de socialisation établissent avec la personne présentant une DI ont une influence certaine dans son développement. Pourtant, peu d’études ont jusqu’à ce jour évalué quelles sont les manières optimales de communiquer et d’interagir des agents socialisation pouvant faciliter l’autodétermination des personnes présentant une DI. Ancrée dans la théorie de l’autodétermination (TAD), cette thèse s’intéresse à évaluer, les effets d’un type de soutien spécifique, le soutien à l’autonomie (ou à l’autodétermination; SA, une manière de communiquer et d’être en relation qui satisfait le besoin d’autodétermination), sur la satisfaction du besoin d’autodétermination et la présence de bénéfices comportementaux, motivationnels et affectifs chez les personnes présentant une déficience intellectuelle légère (DIL) dans un contexte d’apprentissage. Deux articles seront présentés dans cette thèse. Le concept d’autodétermination comprend une large littérature et revêt de multiples définitions. Le premier article, de nature théorique, permettra de mieux le comprendre et de l’éclaircir à la lumière de la théorie fonctionnelle de l’autodétermination (TfAD) et de la théorie de l’autodétermination (TAD). Les études portant sur les interventions de promotion de l’autodétermination de la TAD et de la TfAD seront présentées. Dans un deuxième temps, la TAD et la TfAD seront comparées et contrastées l’une avec l’autre ce qui permettra de démontrer leurs différences, leurs similarités et leurs complémentarités tant au niveau théorique que de l’intervention. Enfin, il est proposé que le SA étudié par la TAD puisse constituer une intervention prometteuse, en plus des interventions proposées par la TfAD, afin de favoriser le développement de l’autodétermination et engendrer des bénéfices comportementaux, motivationnels et affectifs chez cette population. La deuxième étude visera à évaluer cette proposition. Par le biais d’une étude expérimentale, il sera évalué si le SA peut satisfaire le besoin d’autonomie/autodétermination des personnes présentant une DIL et peut faciliter l’intériorisation de la valeur d’une tâche, l’engagement et la diminution de l’anxiété lorsqu’ils réalisent une tâche de résolution de problème, une activité d’apprentissage qui est à la fois importante et fastidieuse. Ainsi, l’étude permettra de comparer les effets d’une tâche réalisée avec ou sans SA (condition expérimentale et témoin respectivement). Les participants (N = 51) présentaient tous une DIL et ont été recrutés dans un centre de réadaptation de la région de Montréal, au Québec (Canada). Les résultats démontrent que comparativement à la condition témoin, le SA amène chez les participants une satisfaction plus élevée du besoin d’autodétermination, un plus grand niveau d’engagement, une plus grande diminution de leur anxiété lors de l’activité et facilite l’intériorisation de la valeur de la tâche. La signification et l’interprétation de ces résultats, de même que leurs implications potentielles pour la recherche et les interventions offertes à ces personnes sont finalement discutées.