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Experiência da fase de transição para o mundo do adulto em jovens com displasias ósseas
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Resumo(s)
O presente estudo explora a experiência de jovens com Osteogênese Imperfeita (OI) e com
Acondroplasia (ACD) durante a fase de transição para o mundo do adulto, assim como a
perspetiva dos seus pais relativamente a esta vivência. Foi realizado um estudo qualitativo
com utilização de grupos focais e entrevistas, com a participação de 15 jovens (11 com OI e 4
com ACD), com idades compreendidas entre os 17 e 28 anos; e 12 pais e mães com filhos
com diagnóstico de displasia óssea (8 com OI e 4 com ACD), com idades compreendidas
entre os 18 e 28 anos. Da análise dos conteúdos das entrevistas emergiram duas categorias, a
autonomia física/funcional e a autonomia pessoal que inclui as escolhas pessoais e a gestão da
sua vida. Os resultados indicam que os jovens entrevistados relatam, no geral ter autonomia a
nível funcional e pessoal e apresentam humor geral positivo, e no entanto, falaram de fatores
que influenciam a autonomia incluindo os associados à condição clínica como características
anatómica dor a fadiga, em especial na ACD e as fraturas na OI; e os associados ao meio
como as atitudes parentais e da sociedade em geral; a rede de amigos; a adequação dos
espaços. No geral, os jovens afirmaram ter bem-estar físico e mental. Um número expressivo,
com prevalência na ACD, referiu experienciar ansiedade, tristeza e irritação. Neste domínio
emergiu como mais um fator de influência a discriminação e verbalizações pejorativas. As
principais preocupações dos jovens incluem a evolução da condição clínica e necessidade de
perda de autonomia e o emprego. Alguns referiram ainda questões de fertilidade de
envolvimento sentimental e sexualidade. A análise do discurso dos pais reforçou os resultados
encontrados nos jovens. Foram, no entanto, observadas algumas diferenças no que diz
respeito ao bem-estar psicológico e a preocupações. Para a grande maioria dos jovens e dos
pais a transição entre os serviços de pediatria e os do adulto foi referida como uma fase vivida
com ansiedade classificando-a, na maioria dos casos como pouco preparada, desfragmentada
e dolorosa.
Estes resultados podem contribuir não só para o melhor conhecimento desta fase de vida nos
jovens com ACD e com OI, mas também para a melhoria do apoio aos jovens e às suas
famílias, e para o desenho de novas investigações nesta área.
The present study explores the experience of young people with Osteogenesis Imperfecta (OI) and Achondroplasia (ACD) during the transition phase to the adult world, as well as the perspective of their parents regarding this experience. A qualitative study was carried out using focus groups and interviews, with the participation of 15 young people (11 with OI and 4 with ACD), aged between 17 and 28 years; and 12 fathers and mothers with children diagnosed with bone dysplasia (8 with OI and 4 with ACD), aged between 18 and 28 years. . From the analysis of the interviews' contents, two categories emerged: physical/functional autonomy and personal autonomy, which includes personal choices and life management. The results indicate that the young people interviewed reported, in general, having autonomy at a functional and personal level and had a positive overall mood, however, they talked about factors that influence autonomy, including those associated with the clinical condition such as anatomical characteristics pain fatigue, especially in ACD and fractures in OI; and those associated with the environment such as parental attitudes and society in general; the network of friends and the adequacy of spaces. Overall, the youngsters stated that they had physical and mental well-being. A significant number, with prevalence in the ACD, reported experiencing anxiety, sadness and irritation. Discrimination and derogatory verbalizations emerged as another influencing factor in this domain. The main concerns of young people include the evolution of the clinical condition and the need for loss of autonomy and employment. Some also mentioned fertility issues of sentimental involvement and sexuality. The analysis of the parents' speech reinforced the results found in the youngsters. Some differences were, however, observed with regard to psychological well-being and concerns. For the great majority of the young people and parents the transition between pediatric and adult services was referred to as a phase lived with anxiety, classifying it in most cases as unprepared, fragmented and painful. These results may contribute not only to a better understanding of this phase of life in young people with ACD and OI, but also to the improvement of support to young people and their families, and to the design of new research in this area.
The present study explores the experience of young people with Osteogenesis Imperfecta (OI) and Achondroplasia (ACD) during the transition phase to the adult world, as well as the perspective of their parents regarding this experience. A qualitative study was carried out using focus groups and interviews, with the participation of 15 young people (11 with OI and 4 with ACD), aged between 17 and 28 years; and 12 fathers and mothers with children diagnosed with bone dysplasia (8 with OI and 4 with ACD), aged between 18 and 28 years. . From the analysis of the interviews' contents, two categories emerged: physical/functional autonomy and personal autonomy, which includes personal choices and life management. The results indicate that the young people interviewed reported, in general, having autonomy at a functional and personal level and had a positive overall mood, however, they talked about factors that influence autonomy, including those associated with the clinical condition such as anatomical characteristics pain fatigue, especially in ACD and fractures in OI; and those associated with the environment such as parental attitudes and society in general; the network of friends and the adequacy of spaces. Overall, the youngsters stated that they had physical and mental well-being. A significant number, with prevalence in the ACD, reported experiencing anxiety, sadness and irritation. Discrimination and derogatory verbalizations emerged as another influencing factor in this domain. The main concerns of young people include the evolution of the clinical condition and the need for loss of autonomy and employment. Some also mentioned fertility issues of sentimental involvement and sexuality. The analysis of the parents' speech reinforced the results found in the youngsters. Some differences were, however, observed with regard to psychological well-being and concerns. For the great majority of the young people and parents the transition between pediatric and adult services was referred to as a phase lived with anxiety, classifying it in most cases as unprepared, fragmented and painful. These results may contribute not only to a better understanding of this phase of life in young people with ACD and OI, but also to the improvement of support to young people and their families, and to the design of new research in this area.
Descrição
Dissertação de mestrado, Psicologia Clínica e da Saúde (Área de Especialização em Psicologia Clínica Cognitivo-Comportamental Integrativa), 2022, Universidade de Lisboa, Faculdade de Psicologia
Palavras-chave
Displasia óssea Osteogénese imperfeita Transição para a vida adulta Jovens adultos Doenças crónicas Estratégias de coping Dissertações de mestrado - 2022