RESUMO
AIMS AND OBJECTIVES: To investigate the experiences of patients with intellectual disabilities, family and paid carers regarding the role of liaison nurses and the delivery of compassionate, person-centred care. From this to propose a model of person-centred care embedded in these experiences. BACKGROUND: People with intellectual disabilities have a high number of comorbidities, requiring multidisciplinary care, and are at high risk of morbidity and preventable mortality. Provision of compassionate, person-centred care is essential to prevent complications and avoid death. DESIGN: A qualitative design was adopted with Interpretative Phenomenological Analysis for data analysis. METHODS: Semistructured interviews and focus groups were conducted. Data were analysed with a focus on compassionate, person-centred care elements and components. Themes were modelled to develop a clinically meaningful model for practice. RESULTS: Themes identified vulnerability, presence and the human interface; information balance; critical points and broken trust; roles and responsibilities; managing multiple transitions; 'flagging up' and communication. CONCLUSIONS: The findings provide the first 'anatomy' of compassionate, person-centred care and provide a model for operationalising this approach in practice. The applicability of the model will have to be evaluated further with this and other vulnerable groups. RELEVANCE TO CLINICAL PRACTICE: This is the first study to provide a definition of compassionate, person-centred care and proposes a model to support its application into clinical practice for this and other vulnerable groups.
Assuntos
Deficiência Intelectual/enfermagem , Papel do Profissional de Enfermagem , Assistência Centrada no Paciente , Adulto , Comunicação , Empatia , Feminino , Grupos Focais , Humanos , Masculino , AutocuidadoRESUMO
AIMS: To examine the role of learning disability liaison nurses in facilitating reasonable and achievable adjustments to support access to general hospital services for people with learning disabilities. DESIGN: Mixed methods study involving four health boards in Scotland with established Learning Disability Liaison Nurses (LDLN) Services. Quantitative data of all liaison nursing referrals over 18 months and qualitative data collected from stakeholders with experience of using the liaison services within the previous 3-6 months. METHODS: Six liaison nurses collected quantitative data of 323 referrals and activity between September 2008-March 2010. Interviews and focus groups were held with 85 participants included adults with learning disabilities (n = 5), carers (n = 16), primary care (n = 39), general hospital (n = 19) and liaison nurses (n = 6). RESULTS/FINDINGS: Facilitating reasonable and achievable adjustments was an important element of the LDLNs' role and focussed on access to information; adjustments to care; appropriate environment of care; ensuring equitable care; identifying patient need; meeting patient needs; and specialist tools/resources. CONCLUSION: Ensuring that reasonable adjustments are made in the general hospital setting promotes person-centred care and equal health outcomes for people with a learning disability. This view accords with 'Getting it right' charter produced by the UK Charity Mencap which argues that healthcare professionals need support, encouragement and guidance to make reasonable adjustments for this group. LDLNs have an important and increasing role to play in advising on and establishing adjustments that are both reasonable and achievable.
Assuntos
Deficiências da Aprendizagem/enfermagem , Humanos , Deficiências da Aprendizagem/fisiopatologia , Reino UnidoRESUMO
A novel series of 1-sulfonyl-4-acylpiperazines as selective cannabinoid-1 receptor (CB1R) inverse agonists was discovered through high throughput screening (HTS) and medicinal chemistry lead optimization. Potency and in vivo properties were systematically optimized to afford orally bioavailable, highly efficacious, and selective CB1R inverse agonists that caused food intake suppression and body weight reduction in diet-induced obese rats and dogs. It was found that the receptor binding assay predicted in vivo efficacy better than functional antagonist/inverse agonist activities. This observation expedited the structure-activity relationship (SAR) analysis and may have implications beyond the series of compounds presented herein.
Assuntos
Fármacos Antiobesidade/síntese química , Piperazinas/síntese química , Receptor CB1 de Canabinoide/antagonistas & inibidores , Sulfonamidas/síntese química , Animais , Fármacos Antiobesidade/química , Fármacos Antiobesidade/farmacologia , Disponibilidade Biológica , Peso Corporal/efeitos dos fármacos , Cães , Agonismo Inverso de Drogas , Ingestão de Alimentos/efeitos dos fármacos , Hepatócitos/metabolismo , Humanos , Técnicas In Vitro , Macaca mulatta , Microssomos Hepáticos/metabolismo , Modelos Moleculares , Piperazinas/química , Piperazinas/farmacologia , Ratos , Estereoisomerismo , Relação Estrutura-Atividade , Sulfonamidas/química , Sulfonamidas/farmacologiaRESUMO
Pompe's disease or glycogen storage disease type II is a genetic disorder affecting skeletal and cardiac muscle. The infantile form is associated with gross hypertrophic cardiomegaly and death in the early years. General anesthesia is associated with potential major morbidity in these patients. We present our experience of regional anesthetic blocks used in five patients with the infantile form of glycogen storage disease type II with and without sedation for 11 surgical procedures during a clinical trial of replacement therapy for this condition. Both femoral nerve blockade and caudal epidural blockade were used with good result. The relative merits of the type of block are discussed in addition to the choice of sedation and risks of general anesthesia. The avoidance of general anesthesia in the newly presenting patient with Pompe's disease may reduce potential morbidity until enzyme replacement has been established.
Assuntos
Anestesia por Condução , Anestesia Geral , Doença de Depósito de Glicogênio Tipo II/patologia , Anestésicos Combinados , Biópsia , Cateteres de Demora , Pré-Escolar , Sedação Consciente , Feminino , Nervo Femoral , Glicogênio/metabolismo , Doença de Depósito de Glicogênio Tipo II/diagnóstico , Humanos , Lactente , Lidocaína , Combinação Lidocaína e Prilocaína , Masculino , Músculo Esquelético/metabolismo , Músculo Esquelético/patologia , Bloqueio Nervoso , Prilocaína , Resultado do TratamentoRESUMO
Some women find pelvic examinations distressing. Some doctors use this as an excuse not to do them. Most professional organizations recommend the presence of a chaperone for every pelvic examination. In family-planning clinics, usually staffed predominantly by women, the provision of a chaperone for every pelvic examination is a burden to the efficient running of clinics and may not be necessary. Views about pelvic examinations and chaperones were sought from 1000 women attending a family-planning clinic and 98 health-care professionals. The majority of women (59%) do not mind being examined, and when the examiner is female most women do not particularly want a chaperone. One-third of women (34%) actively object to a chaperone. Health professionals are not good at predicting women's feelings and expectations about pelvic examinations. Young women (under 25) and nulligravid women are more likely to find pelvic examinations distressing but not more likely to want a chaperone present. Chaperones should be offered to, but not inflicted upon, women undergoing pelvic examination. Younger women need a particularly sensitive approach. Providers should not be deterred from doing pelvic examinations if they are clinically indicated in the mistaken belief that women will object.