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Advisor(s)
Abstract(s)
INTRODUĂĂO: A enfermagem Ă© uma parte integrante dos cuidados de saĂșde,
constituindo-se como fenĂłmeno fundamental para os enfermeiros, a resposta aos
problemas, reais ou potenciais dos doentes e famĂlia, atravĂ©s da resposta Ă s suas necessidades.
Os Cuidados Paliativos assumem-se como uma resposta na prevenção e alĂvio do sofrimento
atravĂ©s da identificação precoce e avaliação rigorosa da dor e problemas fĂsicos, psicolĂłgicos,
sociais e espirituais. SĂŁo cuidados ativos e totais que tĂȘm como objetivo aumentar a qualidade
de vida do doente e famĂlia. A prestação de cuidados de enfermagem atravĂ©s da integração
da filosofia e essĂȘncia dos cuidados paliativos permite o diagnĂłstico de necessidades, fĂsicas,
psicoemocionais, avaliação da intensidade dos sintomas e do sofrimento, numa abordagem
multimodal e multidimensional, promovendo a obtenção da måxima satisfação do doente e
famĂlia. A possibilidade de elaborar um plano de cuidados numa perspetiva compreensiva,
atravĂ©s de uma avaliação holĂstica da saĂșde e da satisfação das necessidades, recursos,
objetivos e desejos, do doente com vista a preservar a sua autonomia e diminuir o seu
sofrimento permitem otimizar os cuidados e a qualidade dos mesmos. O objetivo deste
estudo foi identificar as necessidades de assistĂȘncia de enfermagem, em doentes com
necessidades paliativas no domicĂlio assistidos pelos serviços de saĂșde de um Agrupamento
de Centros de SaĂșde, de uma Unidade Local de SaĂșde, do norte de Portugal.
MATERIAL E MĂTODOS: RealizĂĄmos um estudo, quantitativo, descritivo, transversal e
observacional desenvolvido no contexto dos cuidados de saĂșde primĂĄrios, cujos
participantes foram doentes inscritos no Agrupamento de Centros de SaĂșde de uma Unidade
Local de SaĂșde. Foi definida uma amostragem aleatĂłria estratificada, por unidade saĂșde. A
recolha de dados foi realizada no perĂodo de 29 de abril a 5 de outubro de 2015. Para tal, foi
desenvolvido um instrumento, com base num conjunto de outros instrumentos, que resultou
da pesquisa efetuada e para dar resposta aos objetivos do estudo, de acordo com a revisĂŁo
da literatura. Os dados foram recolhidos apĂłs contacto pessoal no domicĂlio de cada doente
ou num local definido pelo mesmo, para aplicação do instrumento de recolha de dados, num
Ășnico momento. A seleção da amostra passou por vĂĄrias fases. A amostra final resultou da
pergunta surpresa aos clĂnicos, se ficariam surpresos se os pacientes selecionados
aleatoriamente, morressem no perĂodo de um ano.
RESULTADOS: Dos 234 doentes selecionados, resultaram num total de 121 doentes que
participaram no estudo. A prevalĂȘncia de doentes com necessidades paliativas correspondeu
a 9.5% (prognĂłstico de vida inferior a um ano). SĂŁo maioritariamente mulheres, com mais
de 70 anos de idade, inativas, com baixa escolaridade e residentes em alojamento prĂłprio
(moradias) com condiçÔes habitacionais adequadas para as suas limitaçÔes. Quanto à s
necessidades dos doentes destacamos a dimensĂŁo fĂsica, associado a sintomas de dor e
astenia; preocupaçÔes adicionais como sentirem-se um fardo para a famĂlia, nĂŁo serem
independentes e Ășteis, ausĂȘncia de contacto com os amigos; a nĂvel emocional sentem-se
tristes, nervosos e preocupados quanto Ă evolução da sua doença; na dimensĂŁo espiritual a falta de sentido e propĂłsito para viverem e nĂŁo sentirem paz de espĂrito; na dimensĂŁo social
e familiar, possuĂrem uma mĂĄ relação com os amigos, pouca proximidade do parceiro ou
cuidador e ausĂȘncia de apoio emocional por parte da famĂlia; na funcionalidade, sentem-se
pouco realizados profissionalmente, insatisfeitos com a sua qualidade de vida e nĂŁo gostam
do que fazem no seu quotidiano. Em termos de recursos os doentes raramente recorrem ao
serviço privado e no serviço pĂșblico, recorrem essencialmente Ă s consultas de enfermagem
no centro de saĂșde e domiciliĂĄrias, a consultas mĂ©dicas nos hospitais e quanto a exames de
diagnóstico, às anålises e radiografias e tratamentos, para realização de pensos a feridas.
DISCUSSĂO: A taxa de prevalĂȘncia de doentes com necessidades paliativas Ă©
consideravelmente superior ao estimado o que poderĂĄ estar associada Ă s idades dos sujeitos
e Ă estimativa prognĂłstica dos clĂnicos que os referenciaram. Em relação ao perfil
sociodemogrĂĄfico, vai de encontro ao conhecimento encontrado, sendo na maioria mulheres,
idosas, aposentadas e a viverem apenas com o cĂŽnjuge. Relativamente Ă s necessidades estĂŁo
adequadas Ă s necessidades identificadas em outros estudos internacionais, na assistĂȘncia a
doentes com necessidades de cuidados paliativos, no domicĂlio. A dimensĂŁo fĂsica Ă© uma
necessidade muito reportada pelos doentes, pela presença de sintomas não controlados,
seguida das preocupaçÔes como ser um peso para a famĂlia, seguindo-se a dimensĂŁo
emocional, espiritual, sociofamiliar e por fim a funcionalidade. Os recursos mais utilizados
pelos doentes corroboram com a evidĂȘncia encontrada, sendo o serviço pĂșblico o mais
solicitado e dentro deste, a nĂvel dos cuidados de saĂșde primĂĄrios, as consultas de
enfermagem, sĂŁo as mais requeridas pelos doentes que permanecem e pretendem serem
cuidados no domicĂlio.
CONCLUSĂO: Os resultados deste estudo possibilitam identificar as necessidades dos
doentes portadores de doenças crónicas, avançadas, progressivas e limitadoras da vida que
pretendem ser cuidados e morrer no seu domicĂlio, bem como, determinar os recursos
utilizados por estes. O estudo constitui-se como um valioso recurso para a valorização do
papel da enfermagem na gestão estratégica do planeamento de cuidados e promoção de
qualidade de vida, assim como permite identificar um conjunto de necessidades de
intervenção que poderĂŁo e deveriam ser desenvolvidas dentro do Sistema Nacional de SaĂșde
em termos de requisitos formativos, diretrizes de enfermagem, custo-efetividade e iniciativas
de investigação.
BACKGROUND: Nursing is an integral part of health care being the key phenomenon for nurses, addressing the real or potential problems of patients and family, meeting their needs. Palliative Care is the response in prevention and relief of suffering by means of early identification and accurate assessment of pain, physical, psychological, social, and spiritual problems. This response is both an active and total care approach, with the aim of increasing life quality of patients and their families. Early integration of the essence and philosophy of Palliative Care allows diagnosis of physical and psycho-emotional needs that, through nursing care, permits assessing the severity of symptoms and suffering. This early integration is obtained through a multimodal and multidimensional approach that promotes selfachievement and the maximum satisfaction of the patient. The development of a care plan with the perspective of understanding the patientâs needs allows optimization of care and quality. This goal can be achieved through a holistic assessment of health and satisfaction of needs, resources, goals and desires of the patients in order to preserve their autonomy and reduce their suffering. The aim of this study was to identify the nursing care needs of home assisted patients requiring palliative care services from primary care centers belonging to a Local Health Unit, the north of Portugal. METHODS: A quantitative, descriptive, cross-sectional, observational study was performed, in the context of primary health care, in which participants were patients enrolled in a group of primary care centers belonging to a Local Health Unit. A stratified random sample was defined per health unit and the data collection was conducted from April 29th to October 5th, 2015. An instrument was developed based on a set of other previously existing instruments. These previously existing instruments were selected based on the results from a literature review related to the aims of our study. Data were collected after personal contact at each patientâs home or at a place defined by them for the application of the questionnaire at a single moment. The sample selection went through several phases, with the final sample coming from a surprise question posed to the physicians. In this surprise question, physicians were asked if they would be surprised in case the patients randomly selected died in a 1 year period. RESULTS: Of the 234 selected patients, 121 of them participated in the study. The prevalence of patients with palliative needs amounted to 9.5% (prognosis of life less than 1 year). The majority were women, over 70 years of age, inactive, with low education, and living in their own accommodation (dwelling house) with appropriate housing conditions for their limitations. Regarding the patientsâ needs, we highlight the physical dimension associated with symptoms of pain and asthenia; additional concerns included the fact that patients considered themselves as a burden to the family, feeling neither independent nor useful, and without contact with friends. At the emotional level, these patients reported feeling sad, nervous and concerned about the evolution of their disease. At the spiritual level, these patients reported lack of meaning and purpose for living, and an absence of peace of mind. At social and family dimension, we found that patients had a bad relationship with friends, very little partner or caregiver proximity and lack of emotional support from the family. Concerning functionality, patients felt little professional fulfillment, general dissatisfaction with their quality of life and they reported not liking what they do in every day. In terms of resources, patients rarely resorted to private services. As for the public health services, these patients reported using nursing consultations at the primary care center for dressings, medical consultations in hospitals, and nursing assistance at home. Regarding diagnostic tests, these patients often need analysis and X-rays. DISCUSSION: This study identifies the needs and determines the resources used in patients with chronic, advanced, progressive and life limiting diseases who wish to be cared and die in their homes. The prevalence rate of patients with palliative needs in this study was considerably higher than reported in previous studies. We speculate that this result may be associated with the age of the subjects, and with the prognosis of physicians who have referenced them. Regarding the socio-demographic profile, patients were mostly women, elderly, retired and living only with a spouse, as reported in previous studies. As for the overall home environment, we observed that the overall conditions were appropriate to satisfy the necessities of palliative care patients, as identified in other studies. Regarding the multiple dimensions studied here, the physical dimension was identified by the patients as the most relevant. Within this dimension, patients reported that uncontrolled symptoms, followed by worries about being a burden to the family as primordial in importance. As for other dimensions, patients rank them as: emotional, spiritual, social-family, and finally functionality. The results from these patientsâ reports were further supported by our findings demonstrating that public health services were more requested than private care services. In addition, at primary health care level, nursing consultations were the most requested by patients who remained and want to be cared at home. CONCLUSION: The present study is a valuable resource for strategic management of nursing care planning and promoting quality of life. Additionally, this study can also be used as an instrument for defining a set of interventions to be developed within the National Health System in terms of training requirements, nursing guidelines, cost-effectiveness, and future research initiatives.
BACKGROUND: Nursing is an integral part of health care being the key phenomenon for nurses, addressing the real or potential problems of patients and family, meeting their needs. Palliative Care is the response in prevention and relief of suffering by means of early identification and accurate assessment of pain, physical, psychological, social, and spiritual problems. This response is both an active and total care approach, with the aim of increasing life quality of patients and their families. Early integration of the essence and philosophy of Palliative Care allows diagnosis of physical and psycho-emotional needs that, through nursing care, permits assessing the severity of symptoms and suffering. This early integration is obtained through a multimodal and multidimensional approach that promotes selfachievement and the maximum satisfaction of the patient. The development of a care plan with the perspective of understanding the patientâs needs allows optimization of care and quality. This goal can be achieved through a holistic assessment of health and satisfaction of needs, resources, goals and desires of the patients in order to preserve their autonomy and reduce their suffering. The aim of this study was to identify the nursing care needs of home assisted patients requiring palliative care services from primary care centers belonging to a Local Health Unit, the north of Portugal. METHODS: A quantitative, descriptive, cross-sectional, observational study was performed, in the context of primary health care, in which participants were patients enrolled in a group of primary care centers belonging to a Local Health Unit. A stratified random sample was defined per health unit and the data collection was conducted from April 29th to October 5th, 2015. An instrument was developed based on a set of other previously existing instruments. These previously existing instruments were selected based on the results from a literature review related to the aims of our study. Data were collected after personal contact at each patientâs home or at a place defined by them for the application of the questionnaire at a single moment. The sample selection went through several phases, with the final sample coming from a surprise question posed to the physicians. In this surprise question, physicians were asked if they would be surprised in case the patients randomly selected died in a 1 year period. RESULTS: Of the 234 selected patients, 121 of them participated in the study. The prevalence of patients with palliative needs amounted to 9.5% (prognosis of life less than 1 year). The majority were women, over 70 years of age, inactive, with low education, and living in their own accommodation (dwelling house) with appropriate housing conditions for their limitations. Regarding the patientsâ needs, we highlight the physical dimension associated with symptoms of pain and asthenia; additional concerns included the fact that patients considered themselves as a burden to the family, feeling neither independent nor useful, and without contact with friends. At the emotional level, these patients reported feeling sad, nervous and concerned about the evolution of their disease. At the spiritual level, these patients reported lack of meaning and purpose for living, and an absence of peace of mind. At social and family dimension, we found that patients had a bad relationship with friends, very little partner or caregiver proximity and lack of emotional support from the family. Concerning functionality, patients felt little professional fulfillment, general dissatisfaction with their quality of life and they reported not liking what they do in every day. In terms of resources, patients rarely resorted to private services. As for the public health services, these patients reported using nursing consultations at the primary care center for dressings, medical consultations in hospitals, and nursing assistance at home. Regarding diagnostic tests, these patients often need analysis and X-rays. DISCUSSION: This study identifies the needs and determines the resources used in patients with chronic, advanced, progressive and life limiting diseases who wish to be cared and die in their homes. The prevalence rate of patients with palliative needs in this study was considerably higher than reported in previous studies. We speculate that this result may be associated with the age of the subjects, and with the prognosis of physicians who have referenced them. Regarding the socio-demographic profile, patients were mostly women, elderly, retired and living only with a spouse, as reported in previous studies. As for the overall home environment, we observed that the overall conditions were appropriate to satisfy the necessities of palliative care patients, as identified in other studies. Regarding the multiple dimensions studied here, the physical dimension was identified by the patients as the most relevant. Within this dimension, patients reported that uncontrolled symptoms, followed by worries about being a burden to the family as primordial in importance. As for other dimensions, patients rank them as: emotional, spiritual, social-family, and finally functionality. The results from these patientsâ reports were further supported by our findings demonstrating that public health services were more requested than private care services. In addition, at primary health care level, nursing consultations were the most requested by patients who remained and want to be cared at home. CONCLUSION: The present study is a valuable resource for strategic management of nursing care planning and promoting quality of life. Additionally, this study can also be used as an instrument for defining a set of interventions to be developed within the National Health System in terms of training requirements, nursing guidelines, cost-effectiveness, and future research initiatives.
Description
Keywords
Cuidados paliativos AssistĂȘncia de enfermagem Necessidades Cuidar no domicĂlio Palliative care Nursing care Needs Home care