Family Management Style Framework and Its Use With Families Who Have a Child Undergoing Palliative Care at Home

Palliative care settings in many countries acknowledge families as their prime focus of care, but in Brazil, to date, researchers have devoted scant attention to that practice setting. In this article, we report the findings of a study that explored how families define and manage their lives when they have a child or adolescent undergoing palliative care at home. Data included individual semistructured interviews with 14 family members of 11 different families. Interviews were transcribed and the coding procedure featured qualitative content analysis methods. The deductive coding was based on the major components of the Family Management Style Framework and the eight dimensions comprising these components. The analysis provides insight into families' daily practices and problems inherent in managing their everyday lives that are encountered when they have a child in palliative care. The article features discussion of implications for the palliative care related development of family nursing practice.

THE KNOWLEDGE ABOUT COMMUNICATION STRATEGIES WHEN TAKING CARE OF THE EMOTIONAL DIMENSION IN PALLIATIVE CARE

The aim of this qualitative study was to investigate existing knowledge and the use of communication strategies in emotional care for patients receiving palliative care in Brazil. It was performed from August, 2008, to July, 2009, with 303 health professionals who worked or had frequent contact with patients receiving palliative care, using a questionnaire. Data was submitted to descriptive and analytical statistical treatment. The professionals reported not knowing about communication strategies, showing a significant difference (p-value 0.0011) in comparing subjects with and without previous training in palliative care, showing that those who had received proper training know/use more communication strategies when providing care for their patients on an emotional level. The strategies most often cited were: careful listening, verbal reaffirmation of care, using open questions, and affective touch. We conclude that there is little knowledge and poor use of communication strategies among health professionals in towards the emotional care of patients receiving palliative care.

COMMUNICATION STRATEGIES USED BY HEALTH CARE PROFESSIONALS IN PROVIDING PALLIATIVE CARE TO PATIENTS

The objective of this study is to verify the relevance and utilization of communication strategies in palliative care. This is a multicenter qualitative study using a questionnaire, performed from August of 2008 to July of 2009 with 303 health care professionals who worked with patients receiving palliative care. Data were subjected to descriptive statistical analysis. Most participants (57.7%) were unable to state at least one verbal communication strategy, and only 15.2% were able to describe five signs or non-verbal communication strategies. The verbal strategies most commonly mentioned were those related to answering questions about the disease/treatment. Among the non-verbal strategies used, the most common were affective touch, looking, smiling, physical proximity, and careful listening. Though professionals have assigned a high degree of importance to communication in palliative care, they showed poor knowledge regarding communication strategies. Final considerations include the necessity of training professionals to communicate effectively in palliative care.

Palliative care in the home: perceptions of nurses in the Family Health Strategy

OBJECTIVE: To understand the perception of nurses from the Family Health Strategy in relation to palliative care in the home. METHODS: A descriptive, exploratory study with a qualitative approach conducted with nine nurses from the Family Health Strategy of the municipality of Lavras - MG. Semi-structured interviews were conducted and data were subjected to content analysis. RESULTS: The various dimensions of care in the home context were identified, along with the performance and limitations of nurses in the care of the patient and his family at end of life. The capacity to establish a bond, by the proximity to people who receive their care, is a remarkable point of the action of these nurses with patients and families in end of life situations. CONCLUSION: The nurses consider the patient and his family as the unit of care, they have the opportunity to share solidarity, experiences and learning, not only from a professional standpoint, but above all, from a human one.

Evaluation of quality of life in a palliative care context: an integrative literature review

The use of scales that have been validated and standardized for different cultures is very useful for identifying demands in the field of Palliative Care and implementing the most appropriate care. This integrative literature review focuses on instruments assessing the Quality of Life of patients under Palliative Care through a journal search in electronic databases. The study consisted of 49 papers identified in Medline/PubMed, of which 18 met the inclusion criteria previously defined. Information concerning the selected studies is presented and later categorized, with a greater emphasis on the analysis of the psychometric properties of validations of the Palliative Outcome Scale, conducted in three countries. This review enabled the identification of instruments already developed and validated for different cultures, increasing the possibility of knowledge in the field.

Association between education in EOL care and variability in EOL practice: a survey of ICU physicians

This study investigated the association between physician education in EOL and variability in EOL practice, as well as the differences between beliefs and practices regarding EOL in the ICU. Physicians from 11 ICUs at a university hospital completed a survey presenting a patient in a vegetative state with no family or advance directives. Questions addressed approaches to EOL care, as well physicians' personal, professional and EOL educational characteristics. The response rate was 89%, with 105 questionnaires analyzed. Mean age was 38 +/- A 8 years, with a mean of 14 +/- A 7 years since graduation. Physicians who did not apply do-not-resuscitate (DNR) orders were less likely to have attended EOL classes than those who applied written DNR orders [0/7 vs. 31/47, OR = 0.549 (0.356-0.848), P = 0.001]. Physicians who involved nurses in the decision-making process were more likely to be ICU specialists [17/22 vs. 46/83, OR = 4.1959 (1.271-13.845), P = 0.013] than physicians who made such decisions among themselves or referred to ethical or judicial committees. Physicians who would apply "full code" had less often read about EOL [3/22 vs. 11/20, OR = 0.0939 (0.012-0.710), P = 0.012] and had less interest in discussing EOL [17/22 vs. 20/20, OR = 0.210 (0.122-0.361), P < 0.001], than physicians who would withdraw life-sustaining therapies. Forty-four percent of respondents would not do what they believed was best for their patient, with 98% of them believing a less aggressive attitude preferable. Legal concerns were the leading cause for this dichotomy. Physician education about EOL is associated with variability in EOL decisions in the ICU. Moreover, actual practice may differ from what physicians believe is best for the patient.

Cross-cultural adaptation and assessment of the reliability and validity of the Core Outcome Measures Index (COMI) for the Brazilian-Portuguese language

The use of patient-orientated questionnaires is of utmost importance in assessing the outcome of spine surgery. Standardisation, using a common set of outcome measures, is essential to aid comparisons across studies/in registries. The Core Outcome Measures Index (COMI) is a short, multidimensional outcome instrument validated for patients with spinal disorders. This study aimed to produce a Brazilian-Portuguese version of the COMI. A cross-cultural adaptation of the COMI into Brazilian-Portuguese was carried out using established guidelines. 104 outpatients with chronic LBP (> 3 months) were recruited from a Public Health Spine Medical Care Centre. They completed a questionnaire booklet containing the newly translated COMI, and other validated symptom-specific questionnaires: Oswestry Disability Index (ODI) and Roland Morris disability scale (RM), and a pain visual analogue scale. All patients completed a second questionnaire within 7-10 days to assess reproducibility. The COMI summary score displayed minimal floor and ceiling effects. On re-test, the responses for each individual domain of the COMI were within 1 category in 98% patients for the domain 'function', 96% for 'symptom-specific well-being', 97% for 'general quality of life', 99% for 'social disability' and 100% for 'work disability'. The intraclass correlation coefficients (ICC2,1) for COMI pain and COMI summary scores were 0.91-0.96, which compared favourably with the corresponding values for the RM (ICC, 0.99) and ODI (ICC, 0.98). The standard error of measurement for the COMI was 0.6, giving a "minimum detectable change" (MDC95%) of approximately 1.7 points i.e., the minimum change to be considered "real change" beyond measurement error. The COMI scores correlated as hypothesised (Rho, 0.4-0.8) with the other symptom-specific questionnaires. The reproducibility of the Brazilian-Portuguese version of the COMI was comparable to that of other language versions. The COMI scores correlated in the expected manner with existing but longer symptom-specific questionnaires suggesting good convergent validity for the COMI. The Brazilian-Portuguese COMI represents a valuable tool for Brazilian study-centres in future multicentre clinical studies and surgical registries.

Short-Term Effects of the Use of Non-Rigid Tools for Postural Control by Adults with Intellectual Disabilities

We tested the short-term effects of a nonrigid tool, identified as an "anchor system" (e.g., ropes attached to varying weights resting on the floor), on the postural stabilization of blindfolded adults with and without intellectual disabilities (ID). Participants held a pair of anchors one in each hand, under three weight conditions (250 g, 500 g and 1,000 g), while they performed a restricted balance task (standing for 30 s on a balance beam placed on top of a force platform). These conditions were called anchor practice trials. Before and after the practice trials, a condition without anchors was tested. Control practice groups, who practiced blocks of trials without anchors, included individuals with and without ID. The anchor system improved subjects' balance during the standing task, for both groups. For the control groups, the performance of successive trials in the condition without the anchor system showed no improvement in postural stability. The individuals with intellectual disability, as well as their peers without ID, used the haptic cues of nonrigid tools (i.e., the anchor system) to stabilize their posture, and the short-term stabilizing effects appeared to result from their previous use of the anchor system.

Saethre-Chotzen phenotype with learning disability and hyper IgE phenotype in a patient due to complex chromosomal rearrangement involving chromosomes 3 and 7

The authors describe on a Brazilian girl with coronal synostosis, facial asymmetry, ptosis, brachydactyly, significant learning difficulties, recurrent scalp infections with marked hair loss, and elevated serum immunoglobulin E. Standard lymphocyte karyotype showed a small additional segment in 7p21[46,XX,add(7)(p21)]. Deletion of the TWIST1 gene, detected by Multiplex Ligation Probe-dependent Amplification (MPLA) and array-CGH, was consistent with phenotype of SaethreChotzen syndrome. Array CGH also showed deletion of four other genes at 7p21.1 (SNX13, PRPS1L1, HD9C9, and FERD3L) and the deletion of six genes (CACNA2D2, C3orf18, HEMK1, CISH, MAPKAPK3, and DOCK3) at 3p21.31. Our case reinforces FERD3L as candidate gene for intellectual disability and suggested that genes located in 3p21.3 can be related to hyper IgE phenotype. (C) 2012 Wiley Periodicals, Inc.

Nursing care practices at an outpatient care center from an integrative perspective

Aim: to analyze nursing care practices at a Specialized Outpatient Care Center from the perspective of an integrative health care activity. Method: Interviews with 24 nursing professionals were undertaken. For data analysis, Thematic Content Analysis as proposed by Bardin was applied, resulting in the following themes: the team size and its commitment to health care; professional practices and activity of the nursing team. Results: The size of the nursing team was considered insufficient, which compromises the quality of care and results in work overload and dissatisfaction of the nursing professionals. On the other hand, they were satisfied with the tasks performed day-to-day and related integrality to individual care, considered it essential and usually practiced it daily. Conclusion: It is considered that the nursing team has the potential and commitment to develop their care practice combined with the integrative perspective, and therefore providing quality health care to the population.

KRAS gene mutations in Noonan syndrome familial cases cluster in the vicinity of the switch II region of the G-domain: Report of another family with metopic craniosynostosis

Noonan syndrome (NS) and Noonan-related disorders [cardio-facio-cutaneous (CFC), Costello, Noonan syndrome with multiple lentigines (NS-ML), and neurofibromatosis-Noonan syndromes (NFNS)] are a group of developmental disorders caused by mutations in genes of the RAS/MAPK pathway. Mutations in the KRAS gene account for only a small proportion of affected Noonan and CFC syndrome patients that present an intermediate phenotype between these two syndromes, with more frequent and severe intellectual disability in NS and less ectodermal involvement in CFC syndrome, as well as atypical clinical findings such as craniosynostosis. Recently, the first familial case with a novel KRAS mutation was described. We report on a second vertical transmission (a mother and two siblings) with a novel mutation (p.M72L), in which the proband has trigonocephaly and the affected mother and sister, prominent ectodermal involvement. Metopic suture involvement has not been described before, expanding the main different cranial sutures which can be affected in NS and KRAS gene mutations. The gene alteration found in the studied family is in close proximity to the one reported in the other familial case (close to the switch II region of the G-domain), suggesting that this specific region of the gene could have less severe effects on intellectual ability than the other KRAS gene mutations found in NS patients and be less likely to hamper reproductive fitness. (c) 2012 Wiley Periodicals, Inc.

Inflammatory and Immunological parameters in adults with Down syndrome

Abstract Background The increase in life expectancy within the general population has resulted in an increasing number of elderly adults, including patients with Down syndrome (DS), with a current life expectancy of about 50 years. We evaluate the parameters of humoral and cellular immune response, the quantitative expression of the regulator of calcineurin1 gene (RCAN1) and the production of cytokines. The study group consisted of adults DS (n = 24) and a control group with intellectual disability without Down syndrome (ID) (n = 21) and living in a similar environmental background. It was evaluated serology, immunophenotyping, the quantitative gene expression of RCAN1 and the production of cytokines. Results In the DS group, the results showed an increase in NK cells, CD8, decreased CD19 (p < 0.05) and an increase spontaneous production of IFNgamma, TNFalpha and IL-10 (p < 0.05). There was not any difference in RCAN1 gene expression between the groups. Conclusions These data suggest a similar humoral response in the two groups. The immunophenotyping suggests sign of premature aging of the immune system and the cytokine production show a proinflammatory profile.

Estratégias de comunicação utilizadas por profissionais de saúde na atenção à pacientes sob cuidados paliativos

O presente estudo objetivou verificar a relevância e a utilização de estratégias de comunicação em cuidados paliativos. Estudo quantitativo multicêntrico, realizado entre agosto/2008 e julho/2009, junto a 303 profissionais de saúde que trabalhavam com pacientes sob cuidados paliativos, por meio da aplicação de questionário. Os dados foram submetidos a tratamento estatístico descritivo. A maioria (57,7%) não foi capaz de citar ao menos uma estratégia de comunicação verbal e apenas 15,2% mencionaram cinco sinais ou estratégias não verbais. As estratégias verbais mais citadas foram as de cunho interrogativo sobre a doença/tratamento e, dentre as não verbais, destacaram-se o toque afetivo, olhar, sorriso, proximidade física e escuta ativa. Embora os profissionais tenham atribuído alto grau de relevância para a comunicação em cuidados paliativos, evidenciaram escasso conhecimento de estratégias de comunicação. Faz-se necessária a capacitação dos profissionais no que tange à comunicação em cuidados paliativos.

Administração de antibióticos por via subcutânea: uma revisão integrativa da literatura

OBJETIVO: Caracterizar os artigos científicos relacionados ao uso de antibióticos por via subcutânea em pacientes com difícil acesso venoso em cuidados paliativos quanto à tolerância local e eficácia terapêutica. MÉTODOS: Revisão integrativa da literatura realizada nas bases de dados LILACS, CINAHL, PUBMED, EMBASE e Biblioteca Cochrane, utilizando-se como referencial teórico a Prática Baseada em Evidências. RESULTADOS: 17 artigos foram selecionados com dez antibióticos diferentes, sendo o Ceftriaxona, o antibiótico mais estudado. Constatou-se a eficácia terapêutica com base nos parâmetros farmacocinéticos e clínicos. A tolerância local esteve associada à maior diluição dos antibióticos. Com administração de aminoglicosídeos, observaram-se lesões graves e necrose tecidual. A baixa tolerância reforça a restrição de uso apenas para essa classe de antibióticos. CONCLUSÃO: As previsões de eficácia terapêutica e a boa tolerância sugerem uma possibilidade a ser considerada quando se deseja uma via de administração parenteral alternativa, porém recomenda-se cautela, visto que nenhum dos estudos avaliou pacientes em cuidados paliativos.

O conhecimento de estratégias de comunicação no atendimento à dimensão emocional em cuidados paliativos

O estudo objetivou investigar o conhecimento e a utilização de estratégias de comunicação no cuidado da dimensão emocional do paciente sob cuidados paliativos. Com abordagem quantitativa, foi realizado entre agosto/2008 e julho/2009, junto a 303 profissionais de saúde que trabalhavam ou tinham contato frequente com estes pacientes, por meio da aplicação de questionário. Os dados sofreram tratamento estatístico descritivo e analítico. Os profissionais denotaram desconhecimento de estratégias de comunicação, evidenciando-se diferença significativa (p-valor 0,0011) na comparação entre sujeitos com e sem formação prévia em cuidados paliativos, denotando que quem possui capacitação paliativista conhece/utiliza mais estratégias comunicacionais na atenção à dimensão emocional de seus pacientes. As estratégias mais citadas pelos sujeitos foram: escuta ativa, reafirmações verbais de solicitude, uso de perguntas abertas e toque afetivo. Conclui-se que há pouco conhecimento e utilização insatisfatória de estratégias de comunicação, pelos profissionais de saúde no cuidado à dimensão emocional de pacientes sob cuidados paliativos.