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Advisor(s)
Abstract(s)
Introdução: A dor e o sofrimento integram a natureza humana e são, para além da morte, as experiências humanas mais partilhadas. De acordo com a literatura, a população adulta na europa sofre severos danos na sua qualidade de vida devido ao sofrimento inevitável associado à dor crónica reumática. Para este sofrimento, por vezes incompreendido, nem sempre existem respostas terapêuticas.
Objetivos: Validar para a amostra de pessoas com dor crónica reumática as escalas sentido no sofrimento e autotranscendência, e revalidar as escalas de objetivos de vida, ansiedade e depressão, e autoeficácia; avaliar as variáveis em estudo (sentido de vida, autoeficácia, ansiedade e depressão, sentido no sofrimento, índice de sofrimento e atividade da doença); determinar a correlação entre o sentido de vida e as variáveis em estudo; identificar os fatores preditivos do sentido de vida; e identificar as fontes de sentido de vida e a história do sofrimento inevitável.
Metodologia: A investigação compreendeu três estudos: metodológico, correlacional e descritivo. Foi desenvolvida numa amostra de 187 indivíduos, agrupados em função das suas patologias reumáticas em quatro subamostras: grupo com artrite reumatoide (gAR), constituído maioritariamente por elementos do sexo feminino que têm a doença há mais tempo diagnosticada; grupo com espondilite anquilosante (gEA), constituído pelos elementos mais novos, maioritariamente do sexo masculino e com as mais longas vivências de dor; grupo com artrite psoriática (gAP), constituído maioritariamente por elementos do sexo masculino; e o grupo com fibromialgia (gFM), constituído pelos elementos mais velhos, exclusivamente do sexo feminino, que detêm o mais elevado índice de sofrimento, depressão e ansiedade, e o mais baixo de sentido de vida, sendo os únicos que não dispõem de terapêutica específica. Os dados foram recolhidos entre janeiro de 2010 e novembro de 2011 mediante a aplicação de um questionário constituído pelos seguintes instrumentos: caraterísticas sociodemográficas, profissionais e clínicas; escalas de sentido no sofrimento; autotranscendência; objetivos de vida; ansiedade e depressão; e autoeficácia.
Resultados: Verificou-se que todos os instrumentos validados possuem boas caraterísticas psicométricas e são adequados para a prática clínica. Constatou-se que o sentido de vida é um constructo multidimensional, constituído pela junção dos conceitos de objetivos de vida e autotranscendência. A promoção do sentido de vida está associada a níveis mais baixos de depressão e ansiedade e mais altos de sentido no sofrimento e estratégias de coping. Porém, são as subamostras dos participantes com espondilite anquilosante e fibromialgia que evidenciam maior sensibilidade em relação ao sentido de vida. Em ambas as subamostras a promoção do sentido de vida é diretamente proporcional a uma melhor autoeficácia quanto à definição de estratégias de coping, e inversamente proporcional ao índice de sofrimento, sendo a proporcionalidade inversa igualmente verificada entre o sentido de vida dos participantes com espondilite e o índice de atividade da sua doença. Apurou-se que todos os participantes que apresentam uma atitude positiva perante o próprio sofrimento e êxito apresentam, em simultâneo, a melhor categoria avaliativa de sentido de vida, sendo as suas fontes (específicas) de sentido de vida carateristicamente mais transcendentes. Identificou-se a história do sofrimento inevitável de cada uma das subamostras em estudo obtendo-se intervenções específicas, úteis para a orientação na promoção do seu sentido de vida.
Conclusão: A principal conclusão da investigação, foi trazer um novo contributo para um futuro mais esperançoso da pessoa com dor crónica reumática, através de substratos para a orientação na integração do sofrimento inevitável. Neste processo emergiu o constructo multidimensional sentido de vida, cujo estudo propõe respostas científicas, implementáveis na prática do cuidar sob a forma da competência para o cuidado incondicional proactivo. O desenvolvimento desta competência pode ser facilitado com o acesso aos resultados referentes às variáveis facilitadoras e inibidoras do fenómeno para cada uma das subamostras em estudo, aos instrumentos agora disponibilizados, à nova metodologia de análise de conteúdo que direciona para a identificação do sentido de vida e a atitude do participante, permitindo o reconhecimento da sua fonte de sentido de vida; e por fim, pelo acesso ao guião de entrevista da história de sofrimento inevitável que permite obter o perfil do sofrimento inevitável da pessoa com dor crónica reumática, ponto de partida para uma intervenção qualificada.
Introduction: Pain and suffering are part of what it is to be human and, in addition to death, they are the most widely shared of human experiences. According to the literature the quality of life of the adult population in Europe is severely harmed by the inevitable suffering associated with chronic rheumatic pain. Though not always understood, there are not always therapeutic responses to this suffering. Aims: To validate for the sample of patients with chronic rheumatic pain the scales for meaning in suffering and self-transcendence, and to revalidate the scales for life goals, anxiety and depression, and self-efficacy; to assess the study variables (meaning in life, self-efficacy, anxiety and depression, meaning in suffering, suffering index and disease activity); to determine the correlation between meaning in life and the variables under study; to identify the predictive factors for meaning in life; to identify the sources of meaning in life and the history of the inevitable suffering. Methodology: The research involved three studies: methodological, correlational and descriptive. It was developed in a sample of 187 individuals, grouped into four sub-samples according to their rheumatic disorders: one group with rheumatoid arthritis (gAR), consisting mainly of females who have had the disease diagnosed for the longest time; one group with ankylosing spondylitis (gEA), consisting of younger, mostly male, individuals with the longest experience of pain; one group with psoriatic arthritis (gAP), consisting mainly of older males; and one group with fibromyalgia (gFM) composed of older, exclusively female, individuals who have the highest index of suffering, depression and anxiety and the lowest meaning in life. This last was the only group for which no specific treatment is available. The data were gathered between January 2010 and November 2011 by means of a questionnaire consisting of these instruments: sociodemographic, professional and clinical characteristics; scales of meaning in suffering, self-transcendence, purpose of life, anxiety and depression, and self-efficacy. Results: All the instruments validated were found to have good psychometric characteristics and are suitable for clinical practice. It was found that meaning in life is a multidimensional construct consisting of the combination of the concepts of life goals and self-transcendence. Promotion of meaning in life is associated with lower levels of depression and anxiety and higher levels of meaning in suffering and coping strategies. But the sub-samples of participants with ankylosing spondylitis and fibromyalgia show greater sensitivity with respect to the meaning in life. In both subsamples the promotion of meaning in life is directly proportional to improved self-efficacy regarding the definition of coping strategies, and inversely proportional to the suffering index. The inverse proportionality between the meaning in life of the participants with spondylitis and the activity index of their disease was also confirmed. It was found that all participants have a positive attitude to their own suffering and success, and simultaneously show the best assessment category for meaning in life, with their (specific) sources for meaning in life characteristically being, more transcendent. Once the history of inevitable suffering of each of the sub-samples in the study was identified, specific interventions useful for guidance in fostering their meaning in life were derived. Conclusion: The main conclusion of the research was to offer a new contribution for a more hopeful future for people with chronic rheumatic pain through resources for guidance towards the integration of inevitable suffering. In this process there emerged the multidimensional construct meaning in life, whose study indicates scientific responses that can be implemented in care practice in the form of competence for proactive unconditional care. The development of this competence can be helped by access to the results for the variables that facilitate and inhibit the phenomenon for each of the sub-samples in the study, to the instruments now available, to the new content analysis approach that leads to the identification of the meaning in life and attitude of the participant, thereby allowing the recognition of their source of meaning in life; and finally, by access to the script of the history of inevitable suffering which, through an interview, yields the profile of the inevitable suffering of people with chronic rheumatic pain, which is the departure point for qualified intervention
Introduction: Pain and suffering are part of what it is to be human and, in addition to death, they are the most widely shared of human experiences. According to the literature the quality of life of the adult population in Europe is severely harmed by the inevitable suffering associated with chronic rheumatic pain. Though not always understood, there are not always therapeutic responses to this suffering. Aims: To validate for the sample of patients with chronic rheumatic pain the scales for meaning in suffering and self-transcendence, and to revalidate the scales for life goals, anxiety and depression, and self-efficacy; to assess the study variables (meaning in life, self-efficacy, anxiety and depression, meaning in suffering, suffering index and disease activity); to determine the correlation between meaning in life and the variables under study; to identify the predictive factors for meaning in life; to identify the sources of meaning in life and the history of the inevitable suffering. Methodology: The research involved three studies: methodological, correlational and descriptive. It was developed in a sample of 187 individuals, grouped into four sub-samples according to their rheumatic disorders: one group with rheumatoid arthritis (gAR), consisting mainly of females who have had the disease diagnosed for the longest time; one group with ankylosing spondylitis (gEA), consisting of younger, mostly male, individuals with the longest experience of pain; one group with psoriatic arthritis (gAP), consisting mainly of older males; and one group with fibromyalgia (gFM) composed of older, exclusively female, individuals who have the highest index of suffering, depression and anxiety and the lowest meaning in life. This last was the only group for which no specific treatment is available. The data were gathered between January 2010 and November 2011 by means of a questionnaire consisting of these instruments: sociodemographic, professional and clinical characteristics; scales of meaning in suffering, self-transcendence, purpose of life, anxiety and depression, and self-efficacy. Results: All the instruments validated were found to have good psychometric characteristics and are suitable for clinical practice. It was found that meaning in life is a multidimensional construct consisting of the combination of the concepts of life goals and self-transcendence. Promotion of meaning in life is associated with lower levels of depression and anxiety and higher levels of meaning in suffering and coping strategies. But the sub-samples of participants with ankylosing spondylitis and fibromyalgia show greater sensitivity with respect to the meaning in life. In both subsamples the promotion of meaning in life is directly proportional to improved self-efficacy regarding the definition of coping strategies, and inversely proportional to the suffering index. The inverse proportionality between the meaning in life of the participants with spondylitis and the activity index of their disease was also confirmed. It was found that all participants have a positive attitude to their own suffering and success, and simultaneously show the best assessment category for meaning in life, with their (specific) sources for meaning in life characteristically being, more transcendent. Once the history of inevitable suffering of each of the sub-samples in the study was identified, specific interventions useful for guidance in fostering their meaning in life were derived. Conclusion: The main conclusion of the research was to offer a new contribution for a more hopeful future for people with chronic rheumatic pain through resources for guidance towards the integration of inevitable suffering. In this process there emerged the multidimensional construct meaning in life, whose study indicates scientific responses that can be implemented in care practice in the form of competence for proactive unconditional care. The development of this competence can be helped by access to the results for the variables that facilitate and inhibit the phenomenon for each of the sub-samples in the study, to the instruments now available, to the new content analysis approach that leads to the identification of the meaning in life and attitude of the participant, thereby allowing the recognition of their source of meaning in life; and finally, by access to the script of the history of inevitable suffering which, through an interview, yields the profile of the inevitable suffering of people with chronic rheumatic pain, which is the departure point for qualified intervention
Description
Keywords
Dor crónica Sofrimento inevitável Sentido de vida Competência de enfermagem Chronic pain Inevitable suffering Meaning in life Nursing competence