Itinerarios de tratamiento según las narrativas de madres y padres de niños y niñas con discapacidad secundaria a trastornos del neurodesarrollo / Therapeutic itineraries according to the narratives of parents of children with disabilities secondary to neurodevelopmental disorders

Introducción. Los trastornos en el neurodesarrolloinfantil constituyen un 10 % de las causasde discapacidad en la niñez. La búsquedade atención médica configura itinerariosterapéuticos, entendidos como los procesos de búsqueda y atención para el cuidado de la salud, donde surgen oportunidades de diagnósticoy tratamiento. El objetivo fue explorar dichos itinerarios para comprender las oportunidades y barreras que se presentan para instaurarterapias y pautas de crianza que promuevan el neurodesarrollo. Población y métodos. Estudio cualitativomediante entrevistas en profundidad a madres y padres de niños (de junio de 2018 a noviembre de 2019). El análisis se realizó sobre la base del modelo social de la discapacidad y del de desarrollo infantil propuesto por Vygotsky. Resultados. Se realizaron 16 entrevistas.Considerando la edad de inicio de los itinerarios terapéuticos y el diagnóstico, se identificaron dos grupos: aquellos que los comenzaron desde el nacimiento hasta los 2 años (inicio precoz) y quienes lo hicieron a partir de los 3 años (inicio en la primera infancia e infancia tardía). En el primero se habilita tempranamente la búsqueda de tratamiento, mientras que en el segundo se prolongaron en el tiempo las decisiones sobre el inicio y/o el tipo de terapias. El inicio tardío se acompañó de dificultades en la escuela, períodosde incertidumbre, angustia y/o conflictosfamiliares por las complejidades de la crianza. Conclusiones. Los itinerarios terapéuticos seiniciaron en forma precoz en algunos casos y tardía en otros. El inicio de tratamientos permitióincorporar herramientas para acortar la brecha de incongruencia entre las líneas biológica y cultural de desarrollo.

Introduction. Childhood neurodevelopmental disorders account for 10% of the causes of childhood disability. The search for medical care leads to therapeutic itineraries routes taken by individuals to seek health care where diagnostic and treatment opportunities arise. Our objective was to explore these itineraries in order to understand the opportunities and barriers to the implementation of therapies and child rearing patterns promoting neurodevelopment. Population and methods. Qualitative study using in-depth interviews with children's parents (between June 2018 and November 2019). The analysis was based on the social model of disability and Vygotsky's approach to child development. Results. A total of 16 interviews were conducted. Considering the time of diagnosis and the age when the therapeutic itinerary started, 2 groups were identified: those who started from birth to 2 years old (early initiation) and those who started from 3 years old (late childhood initiation). In the first group, the search for treatment starts at an early stage, while in the other group, decisions on the initiation and/or type of treatments are prolonged over time. Late initiation was accompanied by difficulties in school, periods of uncertainty, distress and/or family conflicts due to the complexities of parenting. Conclusions. Therapeutic itineraries started early in some cases and at a later stage in others. The initiation of treatments made it possible to use tools to bridge the gap of discrepancies between the biological and cultural lines of development.

Healthcare Service Accessibility for Brazilian Children with Special Health Care Needs (CSHCN) in Japan and Parenting Stress for Their Mothers / 国際保健医療

<b>Objectives</b><BR>  This study aimed to compare accessibility to the health services in Brazilian CSHCN (children with special health care needs) with non-CSHCN living in Japan and the parenting stresses of the parents of both groups of children, as well as to examine if the children’s being CSHCN is a factor of increasing the parenting stresses of their mothers. <BR><b>Methods</b><BR>  A questionnaire was administered to 130 Brazilian mothers in Japan of children between 3-6 years of age living in Aichi Prefecture, and analyzed the valid answers of 73.The questionnaire was constructed with background information, CSHCN Screener^©, children’s health care service needs, and PSI/SF (Parenting Stress Index Short Form). We evaluated the differences between CSHCN and non-CSHCN, and conducted a multiple linear regression analysis on the parenting stress scores. <BR><b>Results</b><BR>  Nine out of 73 children were identified as CSHCN including four with asthma, three with autism, one with chronic bronchitis, and one with cardiac hypertrophy. Although all CSHCN had family doctors, their mothers had unmet needs for specific health care services, especially dental care, rehabilitation and consultation of specialists. There were three mothers of non-CSHCN who had delayed or forgone care.<BR>  The average score of PSI in all mothers was: TS (Total Stress)＝60.2, PD(Parental Distress)＝22.0, P-CDI(Parent-Child Dysfunctional Interaction)＝16.9, DC(Difficult Child)＝21.7. DC score was significantly higher in CSHCN than in non-CSHCN. Three determinants of elevated TS score were having CSHCN or children with chronic diseases, experiencing severe economic difficulties, and having a husband who did not speak Japanese.<BR><b>Conclusions</b><BR>  The study revealed that Brazilian mothers with CSHCN in Japan were not disadvantaged in terms of access to health services, but had unmet needs in some specific areas. Although the mothers of CSHCN showed relatively low levels of total parenting stress, they had significantly higher levels of stress on the difficult child characteristics. Attention for the stress of the mothers of CSHCN is required.

Imigração e saúde: a (in)acessibilidade das mulheres imigrantes aos cuidados de saúde / Immigration and health: women immigrants' (in)ability to access health care

A utilização dos serviços de saúde pelas populações imigrantes tem vindo a ser considerado um dos mais importantes indicadores da sua integração nas sociedades receptoras (Dias e col., 2009). No entanto, o conhecimento em torno da qualidade e da eficácia do acesso dos/as imigrantes aos cuidados de saúde, especialmente no que respeita às mulheres imigrantes, é ainda escasso em Portugal (Fonseca e col., 2005). Embora os estudos nacionais tenham vindo, nas últimas décadas, a procurar traçar os diferentes perfis sociais das mulheres imigrantes em Portugal, sobretudo no que concerne às suas relações familiares ou laborais (Wall e col., 2005), a investigação no domínio da saúde é ainda parca e exclusora de uma análise centrada no género ou interseccional. Neste texto apresenta-se uma reflexão sobre os determinantes que condicionam a (in)acessibilidade das mulheres imigrantes aos cuidados de saúde, enfatizando-se os fatores que poderão estar a agir no sentido contrário à sua integração neste setor.