A IMPORTÂNCIA DA FAMÍLIA NA RECUPERAÇÃO DE PACIENTES INTERNADOS NA UNIDADE DE TERAPIA INTENSIVA

A Unidade de Terapia Intensiva (UTI) é um setor do hospital destinado ao atendimento de pacientes em estado crítico, que requer cuidados complexos e controles rígidos e, por isso sempre gera um ambiente estressante, não só para a equipe que atende ao paciente mas também aos familiares e portanto induz muitas vezes ao processo de depressão. Estes fatores leva-nos a abordar a necessidade de humanização, no atendimento ao paciente, bem como de seus familiares. A preocupação com a humanização deve estar presente nas equipes de enfermagem como filosofia-diretriz e deve ser um indicador de qualidades desses serviços. Humanizar a UTI significa cuidar do paciente como um todo, englobando o contexto bio-psico-social, incorporando os valores sociais e da família, as esperanças, os culturais e as preocupações pessoais. A humanização deve fazer parte da filosofia da enfermagem. O ambiente físico, os recursos materiais e tecnológicos são importantes, porém não mais significativos do que a natureza humana. O pensamento em ações da equipe de enfermagem, alimentam a reflexão crítica e a construção de uma realidade mais humana e menos agressiva e hostil para as pessoas que diariamente convivem no hospital. A hospitalização altera a rotina não só do paciente mas também dos familiares. De certa forma, a própria hospitalização pode ser vivida como abandono ou morte, à medida que implica um afastamento das pessoas queridas, da casa, como também uma invasão de privacidade. Este trabalho procurou Identificar as necessidades dos familiares ou visitantes, frente à equipe de saúde durante o período de internação na UTI e avaliar o grau de satisfação em relação à qualidade das informações e ao suporte dados à família ou visitante. Os resultados indicam que no Hospital Heliópolis, onde o trabalho foi conduzido, os entrevistados estavam satisfeitos com a equipe multiprofissional pois os pacientes eram bem cuidados, havendo preocupação com os pacientes, e que os médicos, além de compreensivos e competentes, forneceram as informações de modo que eles pudessem compreender,. Porém deve-se ressaltar que 48% dos entrevistados apontam a necessidade de apoio psicológico.(AU)

Putting children forward for epilepsy surgery:a qualitative study of UK parents' and health professionals' decision-making experiences

Background Against a backdrop of recommendations for increasing access to and uptake of early surgical intervention for children with medically intractable epilepsy, it is important to understand how parents and professionals decide to put children forward for epilepsy surgery and what their decisional support needs are. Aim The aim of this study was to explore how parents and health professionals make decisions regarding putting children forward for pediatric epilepsy surgery. Methods Individual interviews were conducted with nine parents of children who had undergone pediatric epilepsy surgery at a specialist children's hospital and ten healthcare professionals who made up the children's epilepsy surgery service multidisciplinary healthcare team (MDT). Three MDT meetings were also observed. Data were analyzed thematically. Findings Four themes were generated from analysis of interviews with parents: presentation of surgery as a treatment option, decision-making, looking back, and interventions. Three themes were generated from analysis of interviews/observations with health professionals: triangulating information, team working, and patient and family perspectives. Discussion Parents wanted more information and support in deciding to put their child forward for epilepsy surgery. They attempted to balance the potential benefits of surgery against any risks of harm. For health professionals, a multidisciplinary approach was seen as crucial to the decision-making process. Advocating for the family was perceived to be the responsibility of nonmedical professionals. Conclusion Decision-making can be supported by incorporating families into discussions regarding epilepsy surgery as a potential treatment option earlier in the process and by providing families with additional information and access to other parents with similar experiences.

Working with people affected by cancer – Phase 1 of a mixed methods exploration of practitioner perspectives in nutritional therapy

Introduction - Nutritional therapy (NT) is a bioscience-based branch of complementary and alternative medicine (CAM) with National Occupational Standards (NOS) and accredited training courses which include compulsory clinical training. Approximately 900 practitioners are registered with the voluntary regulator, the Complementary and Natural Healthcare Council (CNHC), but the number of unregulated practitioners is unknown. Cancer is a leading cause of death worldwide; nutrition and lifestyle factors may affect recurrence and survival rates. Many cancer patients and survivors seek individualised advice on diet and use of supplements and appropriately skilled nutritional therapy practitioners (NTP) may be well-placed to safely provide this advice. Little is known of NTPs’ perspectives on working with people affected by cancer; this study seeks to explore their views on training, use of evidence and other resources, to support the development of safe evidence-based practice in this important clinical area. Methods – An on-line anonymised questionnaire collected data from participants recruited from all UK registered NTPs. Recruitment was facilitated by the British Association for Applied Nutrition and Nutritional Therapy (BANT). Quantitative data on practitioner characteristics, years in practice, other therapies practiced and work with cancer clients were collected. Qualitative data on types of evidence used, barriers to practice and perceived training and support needs when working with clients with cancer, were collected and analysed. SPSS was used to produce descriptive statistics. Preliminary Results – 274/888 (31%) of registered NTPs participated. 61% respondents had accredited NT qualifications of which 46% were at degree or post-graduate level. 73% (202) participants indicated they also had other higher education qualifications, including 153 (56%) at degree or above. When asked to describe their position on cancer work, 17% respondents (40/238) indicated no interest, and 35% (84/238) respondents already work with cancer clients (cancer practitioners - CP). A further 48% (114/238) respondents expressed interest in starting cancer work, and typically requested specialist training and practice guidelines to support this area of clinical practice. Cancer practitioners (CP) rated searches of peer-reviewed literature as most useful for information to support practice, whereas commercial product information was rated least useful. CPs requested engagement with mainstream medicine, more access to research evidence and professional recognition to facilitate and support work with cancer clients. A need for professional networking, mentorship and/or supervision was noted by CP and non-CP respondents, which is of interest since 81% all participants worked as sole practitioners exclusively or as part of their practice, <1% worked within the NHS. Discussion & Conclusions – This is the first detailed documentation of NTP perspectives on cancer work. A number of areas have been identified for further detailed evidence to be collected using focus groups and interviews, including detailed training needs, communication with mainstream cancer professionals, access to research evidence, and professional recognition. This work will inform and support the development of professional practice guidelines for NT and inform the development of specialist training and other resources.

Staff training in autism: The one-eyed wo/man….

Having well-trained staff is key to ensuring good quality autism services, especially since people affected with autism generally tend to have higher support needs than other populations in terms of daily living as well as their mental and physical health. Poorly-trained staff can have detrimental effects on service provision and staff morale and can lead to staff burn-out as well as increased service user anxiety and stress. This paper reports on a survey with health, social care, and education staff who work within the statutory autism services sector in the UK that explored their knowledge and training with regards to autism. Interview data obtained from staff and service users offer qualitative illustrations of survey findings. Overall, the findings expose an acute lack of autism specific training that has detrimental impacts. At best this training was based on brief and very basic awareness raising rather than on in-depth understanding of issues related to autism or skills for evidence-based practice. Service users were concerned with the effects that lack of staff training had on the services they received. The paper concludes with a discussion of policy routes to achieving quality staff training based on international best practice. The focus is on improving the quality of life and mental health for services users and staff as well as making potentially significant cost-savings for governments.

Perfis de Redes Sociais Pessoais de Idosos com e Sem Apoio de Respostas Sociais: um contributo para o desenvolvimento de tipologias no Diagnóstico Social

Sendo um dos objetivos do Serviço Social a promoção do bem-estar social, e considerando a relevância das redes sociais pessoais e do suporte social no bem-estar das pessoas idosas, o presente estudo analisa perfis de redes sociais pessoais de idosos, tendo em conta as suas características estruturais, funcionais e relacionais-contextuais, na perspectiva do Serviço Social sistémico. Na última etapa da vida identificam-se na rede social de um individuo vários determinantes com efeitos cumulativos que favorecem o estreitamento das redes sociais, sendo os contextos de vida, as necessidades de apoio de respostas sociais e a institucionalização, fatores relevantes para a investigação. A investigação quantitativa, utilizou um inquérito por questionário para caracterizar sociodemograficamente a amostra e o Instrumento de Análise de Rede Social Pessoal (Guadalupe, 2009) para caracterizar a rede nas suas dimensões e características, privilegiando-se uma análise bivariada das variáveis. A amostra é composta por 317 idosos com idade igual ou superior a 65 anos. Comparámos três subamostras: 209 idosos que não usufruem do apoio de respostas sociais (65,9%), sendo estes maioritariamente de sexo feminino, casado(a)s ou a viver em união de facto e com média de 75 anos; 71 idosos que usufruem de apoio de respostas sociais (22,4%), na sua maioria de sexo feminino, viúvo(a)s e com 80 anos de média de idade; 37 idosos institucionalizados em Lar (11,7%), mulheres na sua maioria, viúvo(a)s, com média de 83 anos. A hipótese inicial do nosso estudo era a existência de três perfis distintos nas redes sociais pessoais de idosos, conforme a sua relação com as respostas sociais, no entanto, concluiu-se que existe um padrão comum nas redes sociais destes idosos, quer a nível estrutural, como a nível funcional ou contextual. Todavia, identificamos algumas diferenças significativas (p < 0,041) entre os perfis explorados, na composição das redes, na reciprocidade de apoio, na satisfação da rede, na densidade, na frequência de contactos, na distância geográfica e na durabilidades das relações. O estudo constitui-se como um contributo para o Serviço Social, na medida em que oferece conhecimento sobre as redes sociais dos idosos em diferentes contextos de vida, não oferecendo, no entanto, uma categorização que possibilite a construção cabal de tipologias, mas antes, fornece uma base orientadora da avaliação das redes sociais pessoais e de suporte social de idosos para o diagnóstico social. / Being one of Social Work goals the promotion of social well-being, and considering the relevance of personal social networks and social support in the well-being of the elderly, the present study analyzes personal social network’s profiles of elderly people, taking into account their structural, functional and relational-contextual characteristics, in a Social Work systemic perspective. In the last stage of life are identified in an individual's various social network determinants with cumulative effects favouring the narrowing of social networks, being life contexts, the support needs of social responses and institutionalization, relevant factors to the investigation. Our quantitative research used a survey to characterize socially and demographically the sample and the Personal Social Network Analysis Tool (Guadalupe, 2009) to characterize the network in its dimensions and characteristics, using a bivariate analysis of the variables. The sample is composed of 317 elderly aged 65 years old or more. We compared three sub-samples: 209 seniors who do not have the support of social services (65.9%), mostly female, married or cohabiting and with an average of 75 years old; 71 seniors who have support of social services (22.4%), mostly women, widowed and with 80 years of average age; 37 institutionalized elderly (11.7%), mostly women, widowed, with an average age of 83 years. The initial hypothesis of our study was the existence of three distinct personal profiles on social networks, according to their relationship to the social services, however, we have concluded that there is a common pattern in social networks of these elderly, at their structural, functional or contextual level. However, we identified some significant differences (p < 0.041) between the explored profiles, in the composition of networks, support reciprocity, network satisfaction, density, frequency of contacts, geographical distance and durability of relations. The study is a contribution to Social Work, insofar as it provides knowledge about personal social networks of the elderly in different life contexts, not offering, however, a fully categorization that allows the construction of typologies, but rather, provides guidance lines in the evaluation of personal social networks and social support of the elderly to the social diagnosis.

Rede Social Pessoal de Cuidadores Informais de Adultos com Necessidades Especiais

Objetivo. Devido ao aumento da esperança de vida, os adultos com necessidades especiais vivem mais tempo, sendo os seus principais cuidadores, geralmente familiares, também mais envelhecidos. Tal situação representa novas necessidades específicas de apoio, sendo inúmeros os desafios colocados ao Serviço Social no sentido de garantir o bem-estar da pessoa com incapacidade e dos seus cuidadores. Assim, este estudo tem como objetivo realizar um levantamento das necessidades de apoio e a caraterização da rede social pessoal de apoio do cuidador informal de adultos com necessidades especiais. Participantes. A amostra é constituída por 40 cuidadores informais de adultos com necessidades especiais, integrados na resposta social “Centro de Atividades Ocupacionais-CAO” da Associação de Paralisia Cerebral de Coimbra, de ambos os sexos com idade igual ou superior a 40 anos. Material e métodos. Foi utilizado o Instrumento de Avaliação da Rede Social Pessoal e um questionário para caracterização sociodemográfica e sociofamiliar dos cuidadores, assim como para avaliação de necessidades. Resultados. Aproximadamente um terço dos cuidadores relatou a experiência de níveis moderados de sobrecarga associada à prestação de cuidados, enquanto mais de metade relatou a experiência de níveis elevados e muito elevados dessa sobrecarga; o apoio financeiro foi referido como a forma de apoio mais necessária no presente, ainda que o apoio em residência tenha sido percecionado por cerca de um terço dos cuidadores como a forma de apoio mais necessária no futuro; enquanto mais de metade considerou o apoio domiciliário e de unidade residencial (institucional). Estes cuidadores familiares referiram a "incerteza" e a "esperança" como os sentimentos mais frequentemente experienciados em relação ao futuro das suas vidas. No que respeita às redes sociais, as relações familiares são centrais a nível estrutural; em termos de caraterísticas funcionais da rede, foram observados valores mais elevados para as dimensões de reciprocidade do apoio e satisfação com a rede social. Implicações. Este estudo sublinha a importância da avaliação das necessidades de apoio dos cuidadores familiares de adultos com necessidades especiais. A sua implementação sistemática pode auxiliar a tomada de decisão baseada na evidência empírica para as intervenções do Serviço Social, tais como na planificação e gestão de respostas e serviços sociais, a par do reconhecimento e ativação dos recursos das próprias famílias, de forma a promover a eficiência dos recursos e eficácia das intervenções, focadas no bem-estar do cidadão com deficiência e das suas famílias. / Aim. The general increase in human life expectancy has resulted in greater rates of survival for adults with special care needs, as well as for their ageing family caregivers. This situation poses different and specific support needs, which represent a major challenge in social work interventions aimed at ensuring the well-being of disabled persons and their caregivers. Therefore, this study was aimed to describe the needs for support and the perceived social support network of family caregivers of adults with special care needs. Participants. The sample for this study comprised 40 family caregivers of disabled adults with special care needs, of both genders and aged 40 years old at minimum, who attended a long-term care facility at Coimbra Cerebral Palsy Association. Material and methods. Participants were administered a self-report questionnaire on socio-economic, family and caregiving needs, along with the Instrument for Assessing Personal Social Networks. Results. Nearly one third a family caregivers experienced moderate caregiving burden, while more than half experienced high or very high levels of caregiving burden; financial support was perceived as the most needed form of support in the present, but residential home care was identified as the most needed form of support in the future; while more than a half considered home-based support and residential support viable options for their disabled family members with special care needs. These family caregivers reported "uncertainty" and "hope" as the most common feelings towards their family life in the future. On the topic of social networks, family relations were found to be crucial at the structural level; in terms of functional characteristics of the network, elevated scores were observed for reciprocity of support and satisfaction with the social network. Implications. This study highlights the importance of increasing the specificity of the assessments of needs for support in family caregivers of disabled adults with special care needs. The systematic conduction of these assessments may assist evidence-based decision making in social work interventions, such as for planning and managing social services, acknowledging and activating the families' own resources, and ultimately promote the efficacy and effectiveness 57 interventions aimed at improving the well-being of disabled citizens and their families.

Exercise Prescription for Patients with Non-specific Chronic Low Back Pain: a Qualitative Study of Patients' Experiences in Decision Making

Background The culture of current clinical practice calls for collaboration between therapists and patients, sharing power and responsibility. This paper reports on the findings of a qualitative study of exercise prescription for patients with NSCLBP, taking into account issues such as decision making and how this accords with patient preferences and experiences. Objective To understand the treatment decision making experiences, information and decision support needs of patients with NSCLBP who have been offered exercise as part of their management plan. Design A qualitative study using a philosophical hermeneutic approach. Methods Semi-structured interviews with eight patients (including use of brief patient vignettes) was undertaken to explore their personal experiences of receiving exercise as part of the management of their NSCLBP, and their involvement in decisions regarding their care. Findings The findings provide a detailed insight into patients’ perceptions and experiences of receiving exercise-based management strategies. Four themes were formed from the texts: (1) patients’ expectations and patients’ needs are not synonymous, (2) information is necessary but often not sufficient, (3) not all decisions need to be shared, and (4) wanting to be treated as an individual. Conclusions Shared decision making did not appear to happen in physiotherapy clinical practice, but equally may not be what every patient wants. The overall feeling of the patients was that the therapist was dominant in structuring the interactions, leaving the patients feeling disempowered to question and contribute to the decision making.

Experiences of care and adjustment to change in caregivers of children with autoimmune encephalitis: an interpretative phenomenological analysis

Background: Autoimmune encephalitis (AE) occurs in response to an antibody-mediated central nervous system disease and can lead to significant neurodisability. Prior research on family adjustment has described a reciprocal relationship between caregiver functioning, distress and clinical outcome in parents and children with encephalitis. There has been no previous research exploring the experiences of caregivers with a child with AE. Aims: To explore the perspectives of parents and/or caregivers with a child diagnosed with AE regarding (i) their own adjustment from hospital admission to post-discharge, and (ii) their experiences of care and service provision. Methods: A purposive sampling approach was used. Five parents of children with AE participated in a semi-structured interview exploring their experiences of caring for their child and service provision during acute care and post-discharge. Interpretative Phenomenological Analysis (IPA) was used to analyse the transcripts. Main findings and conclusions: Four shared super-ordinate themes with related subthemes emerged: (a) uncertainty, (b) managing our recovery, (c) changes in my child, (d) experiences of service provision. Participants reported emotional distress, often underpinned by recurrent experiences of uncertainty, and ‘loss’ of the previous child, and mediated by coping strategies and social support. While an overall positive experience of inpatient services was reported, parents often perceived post-discharge services as lacking in co-ordination, communication and formal follow-up, resulting in unmet support needs. Implications and recommendations for services, practitioners and future research are discussed.

As necessidades das famílias de jovens com necessidades educativas especiais e sem necessidades educativas especiais, face à escola

Dissertação de apresentada no Instituto Superior de Psicologia Aplicada, para obtenção do grau de Mestre na especialidade de Psicologia Educacional

Searching for best practices to build an inclusive intervention. The international project ENABLIN+ aproach

The project ENABLIN+ is an international partnership for the period of 01/01/2014 to 31/12/2016. It's addressed to the needs of children and youth with complex and intense support needs (CISN), their caregivers and supporters. It wants to develop a system of interdisciplinary in-service training, where professionals and parents of various professional backgrounds learn together, with the aim of improving inclusion, promoting de-institutionalization and enhancing quality of life of the children with CISN, at various age levels. ENABLIN+ promotes an inclusive intervention, not only in social life, but also in education. In this context, this work aims to present and discuss the concept of “best practices” in inclusive intervention based in real world cases. To study that subject we prepare a seminar, where 12 cases of “best practices” in inclusive intervention was presented.

Primary brain tumor patients’ supportive care needs and multidisciplinary rehabilitation, community and psychosocial support services: Awareness, referral and utilization

Primary brain tumors are associated with significant physical, cognitive and psychosocial changes. Although treatment guidelines recommend offering multidisciplinary rehabilitation and support services to address patients’ residual deficits, the extent to which patients access such services is unclear. This study aimed to assess patients’ supportive care needs early after diagnosis, and quantify service awareness, referral and utilization. A population-based sample of 40 adults recently diagnosed with primary brain tumors was recruited through the Queensland Cancer Registry, representing 18.9% of the eligible population of 203 patients. Patients or carer proxies completed surveys of supportive care needs at baseline (approximately three months after diagnosis) and three months later. Descriptive statistics summarized needs and service utilization, and linear regression identified predictors of service use. Unmet supportive care needs were highest at baseline for all domains, and highest for the physical and psychological needs domains at each time point. At follow-up, participants reported awareness of, referral to, and use of 32 informational, support, health professional or practical services. All or almost all participants were aware of at least one informational (100%), health professional (100%), support (97%) or practical service (94%). Participants were most commonly aware of speech therapists (97%), physiotherapists (94%) and diagnostic information from the internet (88%). Clinician referrals were most commonly made to physiotherapists (53%), speech therapists (50%) and diagnostic information booklets (44%), and accordingly, participants most commonly used physiotherapists (56%), diagnostic information booklets (47%), diagnostic information from the internet (47%), and speech therapists (43%). Comparatively low referral to and use of psychosocial services may limit patients’ abilities to cope with their condition and the changes they experience.

Disordered Eating in first year university students: A qualitative study exploring student and support service needs

The paper reports on a qualitative study exploring disordered eating in younger first-year students studying for professional health care related degrees (n=12), and highlights a number of support mechanisms and services required for those students at risk.

Key issues emerging in relation to disordered eating included: concealment; lack of understanding to the nature/risks associated; its use as a stress coping mechanism; isolation; perception as mental health issues with attaching stigma and reticence to acknowledge; invisible experience; wariness of eating in more public refectories. Finally positivity about their arrival at university and that their experience with disordered eating could potentially add to their repertoire as future health care professionals.

Conclusion: The University could; further develop its outreach to new students with a more consistently supportive person-centred program including stress training and more support via student buddying; extend its program on positive mental health; greater awareness particularly the sub-clinical group; consider some small changes and adaptations to the refectory eating areas to better facilitate at- risk students. Finally the University could perhaps better use the first few months of student's arrival at university to help embed a program to develop a stronger sense of coherence and well-being.

Destigmatizing Child and Adolescent Mental Health through Group Chat: A Workshop to Support the Emotional and Social Needs of Youth

The purpose of this project was to raise awareness surrounding child and adolescent mental health in an effort to reduce preconceived stigmas in relation to this specialized field. This project presented a literature review of the current state of child and adolescent mental health in Canada today, including the prevalence and several treatment options for young people confronting mental health challenges. Consideration of the powerful role of the education system upon youth with mental health issues became evident, specifically regarding early identification and prevention. A needs assessment was conducted to gather feedback from the clinical practitioners of a Section 23 classroom within a Southern Ontario hospital. This assessment was used to develop an informational and pedagogical workshop resource to extend practitioner understanding of this pertinent issue and support the social and emotional needs of young people confronting mental heath challenges. Results of the assessment indicated the significant need for such a workshop resource, and these responses were used to guide the development of Group Chat: A Workshop to Support the Emotional and Social Needs of Youth. The latter was subsequently presented to participants, whereby evaluative questionnaires indicated the efficacy and usefulness of this workshop resource to both practitioners and students alike.