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Satisfação com os cuidados de saúde e qualidade de vida dos pais em crianças/adolescentes com doença oncológica
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Resumo(s)
A doença oncológica pediátrica representa um imenso desafio para as famílias,
especialmente para os pais que, na maioria das vezes, assumem o papel de
cuidadores principais. Apesar dos avanços nos tratamentos e da elevada
probabilidade de sobrevivência, o impacto físico, emocional e social da doença
persiste ao longo do tempo, afetando significativamente a dinâmica e a qualidade de
vida familiar.
Inserido no projeto internacional: Integração da Doença Crónica na Vida da
Família: FAMA CII, este estudo teve como objetivos avaliar a perceção dos pais sobre
a qualidade de vida familiar no contexto da doença oncológica pediátrica, a sua
satisfação com os cuidados de saúde prestados, bem como a associação entre estas
duas variáveis e entre estas e as variáveis clínicas e sociodemográficas dos pais. Foi
desenvolvido um estudo quantitativo, descritivo-correlacional, com aplicação dos
instrumentos PedsQL™ Módulo do Impacto na Família e PedsQL™ Módulo de
Satisfação com os Cuidados de Saúde. Os participantes foram 102 pais de
crianças/adolescentes com diagnóstico oncológico, acompanhadas numa unidade
hospitalar pediátrica do Norte de Portugal.
Os resultados revelam que a qualidade de vida dos pais é significativamente
afetada, sobretudo nas dimensões física e emocional, destacando-se o impacto do
stresse, ansiedade e cansaço. Os pais reportaram níveis elevados de preocupação
com os tratamentos e o futuro dos filhos, apesar de percecionarem positivamente a
saúde física e psicológica destes últimos. Quanto à satisfação com os cuidados de
saúde, os níveis reportados foram elevados em todas as dimensões avaliadas, sendo
mais expressivos nas áreas da comunicação, competências técnicas e inclusão da
família no processo terapêutico. Ainda assim, foram identificadas lacunas no apoio
emocional prestado pelos profissionais de saúde, especialmente no suporte dado, no
que diz respeito ao regresso à escola e ao acompanhamento pós-tratamento.
Conclui-se que, embora a satisfação com os cuidados de saúde seja elevada,
subsiste uma sobrecarga emocional e física associada ao papel de cuidador.
Intervenções centradas no apoio emocional e na capacitação dos pais para lidar com
o impacto prolongado da doença poderão contribuir para melhorar a qualidade de vida
familiar e promover a continuidade dos cuidados no contexto da oncologia pediátrica.
Pediatric oncological disease represents a major challenge for families, especially for parents who, in most cases, take on the role of primary caregivers. Despite advances in treatment and a high probability of survival, the physical, emotional, and social impact of the disease persists over time, significantly affecting family dynamics and quality of life. This study, part of the international project Integration of Chronic Illness into Family Life: FAMA CII, aimed to assess parents’ perceptions of family quality of life in the context of pediatric oncological disease, their satisfaction with the healthcare provided, as well as the association between these two variables and the parents’ clinical and sociodemographic characteristics. A quantitative, descriptive-correlational study was conducted using the PedsQL™ Family Impact Module and the PedsQL™ Healthcare Satisfaction Module. Participants included 102 parents of children/adolescents with an oncological diagnosis, followed in a pediatric hospital unit in Northern Portugal. The results show that parents’ quality of life is significantly affected, particularly in the physical and emotional dimensions, with stress, anxiety, and fatigue being the most prominent issues. Parents reported high levels of concern regarding treatments and their children's future, despite perceiving their children’s physical and psychological health positively. Regarding satisfaction with healthcare services, the reported levels were high across all dimensions, with particularly strong results in communication, technical skills, and family inclusion in the therapeutic process. Nevertheless, gaps were identified in the emotional support provided by healthcare professionals, especially regarding support offered in the return-to-school process and post-treatment follow-up. In conclusion, although satisfaction with healthcare services is high, there remains an emotional and physical burden associated with the caregiving role. Interventions focused on emotional support and empowering parents to cope with the prolonged impact of the disease may contribute to improving family quality of life and promoting continuity of care in the pediatric oncology context.
Pediatric oncological disease represents a major challenge for families, especially for parents who, in most cases, take on the role of primary caregivers. Despite advances in treatment and a high probability of survival, the physical, emotional, and social impact of the disease persists over time, significantly affecting family dynamics and quality of life. This study, part of the international project Integration of Chronic Illness into Family Life: FAMA CII, aimed to assess parents’ perceptions of family quality of life in the context of pediatric oncological disease, their satisfaction with the healthcare provided, as well as the association between these two variables and the parents’ clinical and sociodemographic characteristics. A quantitative, descriptive-correlational study was conducted using the PedsQL™ Family Impact Module and the PedsQL™ Healthcare Satisfaction Module. Participants included 102 parents of children/adolescents with an oncological diagnosis, followed in a pediatric hospital unit in Northern Portugal. The results show that parents’ quality of life is significantly affected, particularly in the physical and emotional dimensions, with stress, anxiety, and fatigue being the most prominent issues. Parents reported high levels of concern regarding treatments and their children's future, despite perceiving their children’s physical and psychological health positively. Regarding satisfaction with healthcare services, the reported levels were high across all dimensions, with particularly strong results in communication, technical skills, and family inclusion in the therapeutic process. Nevertheless, gaps were identified in the emotional support provided by healthcare professionals, especially regarding support offered in the return-to-school process and post-treatment follow-up. In conclusion, although satisfaction with healthcare services is high, there remains an emotional and physical burden associated with the caregiving role. Interventions focused on emotional support and empowering parents to cope with the prolonged impact of the disease may contribute to improving family quality of life and promoting continuity of care in the pediatric oncology context.
Descrição
Palavras-chave
Qualidade de Vida Pais Doença oncológica pediátrica Satisfação com os Cuidados de Saúde