Caregiver-centred empowerment for families raising autistic children:A qualitative case study from Argentina

Autistic children and their caregivers in Argentina often lack access to information, resources and evidence-based interventions. Caregiver empowerment may help support families to uphold their child’s rights and access suitable education and support. This study aimed to examine the perceptions on empowerment of caregivers of autistic children in Argentina. This was a phenomenological, qualitative study. We conducted 32 semi-structured individual interviews remotely. Participants included caregivers, health service providers, non-governmental organisation representatives, special education teachers and policy representatives. Data were analysed thematically. We developed three main themes: Caregiver agency: from intuitive coping strategies to entrepreneurship; ‘I had to cut down on therapy’: Economic instability and inequality affecting service access; and Equipping caregivers to be empowered. Both caregivers and professionals talked about the contribution of socio-economic inequalities to caregivers’ sense of disempowerment. Caregivers identified coping strategies and discussed their experiences with advocacy. They expressed that in-person and online support groups have an empowering effect. Based on participant views, strategies supporting caregiver empowerment may involve: interventions are co-designed by professionals and caregivers; focusing on caregiver mental health; and addressing the profound impact of poverty on the quality of life of families. Lay abstract: Caregivers of children with developmental disabilities, including autism, often struggle to access services, information and resources in Argentina. Little is known about how caregivers can be empowered to support their children as they wish to in the Argentinian setting. We spoke with 32 people online to understand existing and potential practices of supporting caregivers. The people we spoke with included caregivers, health service providers, non-governmental organisations’ representatives providing services or technical support, special education teachers and policy representatives. Participants said that poverty, and inequalities in accessing support, impact how caregivers can support their children. They mentioned examples that help caregivers feel empowered, such as peer support groups and caregiver training. Many caregivers spoke about how they became advocates for their children and how they developed initiatives such as advocacy campaigns and well-being support groups. Caregivers in Argentina may be empowered in various ways, and the following strategies can improve empowerment: strengthening collaboration between professionals and caregivers; focusing on caregiver mental health; and addressing the profound impact of poverty on the quality of life of families

Caregiver-centred empowerment for families raising autistic children: a qualitative case study from Argentina

Autistic children and their caregivers in Argentina often lack access to information, resources and evidence-based interventions. Caregiver empowerment may help support families to uphold their child’s rights and access suitable education and support. This study aimed to examine the perceptions on empowerment of caregivers of autistic children in Argentina. This was a phenomenological, qualitative study. We conducted 32 semi-structured individual interviews remotely. Participants included caregivers, health service providers, non-governmental organisation representatives, special education teachers and policy representatives. Data were analysed thematically. We developed three main themes: Caregiver agency: from intuitive coping strategies to entrepreneurship; ‘I had to cut down on therapy’: Economic instability and inequality affecting service access; and Equipping caregivers to be empowered. Both caregivers and professionals talked about the contribution of socio-economic inequalities to caregivers’ sense of disempowerment. Caregivers identified coping strategies and discussed their experiences with advocacy. They expressed that in-person and online support groups have an empowering effect. Based on participant views, strategies supporting caregiver empowerment may involve: interventions are co-designed by professionals and caregivers; focusing on caregiver mental health; and addressing the profound impact of poverty on the quality of life of families

Razões de desmame e de introdução da mamadeira: uma abordagem alternativa para seu estudo

Reasons, alleged by mothers, for early weaning and for the introduction of breast-milk substitutes were studied, in 1985, in a public maternity hospital of S. Paulo City. These mothers were part of an intervention project to support and promote breast-feeding through public health services. Eight hundred and seventy-five women were followed up from delivery to the 4th month of the baby's life. Reasons for weaning were collected immediately afterwards ("single interview") and were also again asked for when the mother returned to the health unit ("multiple interview"). All the reasons given were collected and classified according to "responsibility": of the mother (her own desire to wean), of her baby (attributed to the baby), of her body (the mother's physical reasons) and of other people (doctor, husband, neighbor, etc.). The most prevalent reasons for the introduction of breast-milk substitutes, according to "multiple interview", were: mother had to work out (20.5%), got agitated (12.5%) and convenience (11.0%). According to "single interview" they were: the baby's crying (23.0%), prior conceptions of infant feeding (12.5%), working out (11.0%). These differences were not so evident among the reasons for complete weaning; however, considering weaning as a long process in which the reasons for the introduction of breast-milk substitutes may be linked to reasons for the "sevrage", the advantages of utilizing all the answers of different contacts with the women ("multiple interview") over against just one answer given on one ocasion as a contribution to the clarification of the weaning process in each cultural site, is indicated. The reasons gathered and classified according to "responsibility" show that "multiple interview" beings to light more answers related to the desire to wean on the part of the mother herself than the baby, or the mother's body. It is argued that the health system has limits to its ability to intervene in the most prevalent reasons for early weaning and the necessity for social policies, such as maternity protection legislation, child nurseries, etc., in support of breast-feeding, is commented on.Descrevem-se as razões alegadas pelas mães para o desmame e a introdução de mamadeira em uma amostra de 875 mulheres, de um bairro de São Paulo, que deram a luz em uma maternidade pública local, em 1985. Estas mães fizeram parte de um estudo de intervenção pró-amamentação desenvolvido nos serviços públicos de saúde por elas freqüentados até o 4º mês de vida das crianças. Discutem-se formas diferentes de coleta de dados sobre o processo de desmame e apresentam-se três maneiras distintas de analisar tais dados. Conclui-se que as razões mais alegadas pelas mães para introduzir a mamadeira, quando colhidas em várias entrevistas com elas ("entrevistas múltiplas") são: trabalho fora do lar (20,5%), nervosismo (12,5%) e conveniência da mãe (11/0%). Entretanto, quando tais razões são argüidas em apenas um primeiro contacto, assim aparecem: choro do bebê (23,0%), conceitos ou suposições sobre o aleitamento (12,5%) e trabalho fora do lar (11,0%). Estas diferenças no perfil de razões conforme o tipo de coleta, não aparecem evidentes no caso de razões para o desmame completo, entretanto, acreditando-se ser o desmame um processo, onde razões de introdução da mamadeira e do desmame devem ser vistas como um todo, as autoras apontam para a vantagem de se utilizar todas as respostas da mãe em diversos momentos ("entrevistas múltiplas") no sentido de melhor contribuir para a elucidação daquele processo. O agrupamento das razões conforme responsabilização pelo desmame mostra que, ao se permitir que a mãe reveja seu discurso em várias entrevistas, ao invés de em uma única, ela passa a responsabilizar mais a si própria (ato de vontade) do que o bebê ou o seu próprio corpo. Apontam-se limites do sistema de saúde em interferir no processo de desmame precoce e perspectivas de intervenção de ordem mais ampla

The impact of surgical delay on resectability of colorectal cancer: An international prospective cohort study

AIM: The SARS-CoV-2 pandemic has provided a unique opportunity to explore the impact of surgical delays on cancer resectability. This study aimed to compare resectability for colorectal cancer patients undergoing delayed versus non-delayed surgery. METHODS: This was an international prospective cohort study of consecutive colorectal cancer patients with a decision for curative surgery (January-April 2020). Surgical delay was defined as an operation taking place more than 4 weeks after treatment decision, in a patient who did not receive neoadjuvant therapy. A subgroup analysis explored the effects of delay in elective patients only. The impact of longer delays was explored in a sensitivity analysis. The primary outcome was complete resection, defined as curative resection with an R0 margin. RESULTS: Overall, 5453 patients from 304 hospitals in 47 countries were included, of whom 6.6% (358/5453) did not receive their planned operation. Of the 4304 operated patients without neoadjuvant therapy, 40.5% (1744/4304) were delayed beyond 4 weeks. Delayed patients were more likely to be older, men, more comorbid, have higher body mass index and have rectal cancer and early stage disease. Delayed patients had higher unadjusted rates of complete resection (93.7% vs. 91.9%, P = 0.032) and lower rates of emergency surgery (4.5% vs. 22.5%, P < 0.001). After adjustment, delay was not associated with a lower rate of complete resection (OR 1.18, 95% CI 0.90-1.55, P = 0.224), which was consistent in elective patients only (OR 0.94, 95% CI 0.69-1.27, P = 0.672). Longer delays were not associated with poorer outcomes. CONCLUSION: One in 15 colorectal cancer patients did not receive their planned operation during the first wave of COVID-19. Surgical delay did not appear to compromise resectability, raising the hypothesis that any reduction in long-term survival attributable to delays is likely to be due to micro-metastatic disease

Déplacer les frontières du travail

Les reconfigurations récentes du capitalisme industriel dans les sociétés occidentales ont jeté le trouble sur la définition même du travail et sa fonction dans la société. À partir des années 1970, ces métamorphoses ont suscité, dans le champ des sciences humaines et sociales, un mouvement d’extension consistant à qualifier de travail un nombre croissant d’activités considérées jusqu’alors comme relevant de la générosité, du partage, de la solidarité, du don, du plaisir, de la création ou de l’engagement. À un moment historique de remise en cause du travail salarié et de sa capacité intégrative dans la société, de montée du chômage et de marchandisation générale de l’activité humaine, ce numéro de la revue Tracés souhaite poursuivre cette entreprise de dénaturalisation du travail en appréciant les luttes de qualification qui viennent régulièrement renégocier ses frontières. Le terme de frontières a son importance. Envisagé comme zones de contact mouvantes, il permet de sortir d’une réification des activités et de porter l’attention sur la plasticité du travail et de ses délimitations. Si chacune des contributions du numéro apporte un éclairage particulier à notre problématique, toutes défendent une même optique : restituer de façon positive les frontières mouvantes de l’activité laborieuse au plus près des pratiques sociales, saisir en quelque sorte la catégorie travail en action, dans un souci de reconnaissance des individus et de leur engagement dans la société. The recent shifting of industrial capitalism in western societies has blurred the definition of work itself and its place in society. From the 70’s on, these changes have led, in the fields of human and social sciences, to an extension consisting in calling work a growing number of activities which used to be qualified as generosity, sharing, solidarity, gift, pleasure, creation or commitment. At this time of historical rethinking of employed labour and of its integrative capacity in society, of growing unemployment and of general merchandizing of human activity, this issue of Tracés Magazine wishes to follow this movement of denaturalization of work by appreciating the classification struggles which regularly renegotiate its boundaries. The term “boundaries” is essential. Seen as moving contact areas, it allows to overcome the commodification of activities and to focus on the plasticity of works and its boundaries. If each of the contributions of this issue sheds a light on our conundrum, all of them support a same vision: restore a positive view of the moving frontiers of work activities in close link with social practices, to seize as it is the work category in action, to achieve recognition of individuals and of their commitment to society

Comparação entre as variações respiratórias da amplitude de onda pletismográfica da oximetria de pulso e do pulso arterial em pacientes com e sem uso de norepinefrina Comparison between respiratory pulse oximetry plethysmographic waveform amplitude and arterial pulse pressure variations among patients with and without norepinephrine use

OBJETIVOS: A variação respiratória da pressão arterial é um bom preditor da resposta a fluidos em pacientes ventilados. Foi recentemente demonstrado que a variação respiratória na pressão arterial de pulso se correlaciona com a variação da amplitude da onda pletismográfica da oximetria de pulso. Nossa intenção foi avaliar a correlação entre a variação respiratória da pressão arterial de pulso e a variação respiratória na amplitude da onda pletismográfica da oximetria de pulso, e determinar se esta correlação foi influenciada pela administração de norepinefrina. MÉTODOS: Estudo prospectivo de sessenta pacientes com ritmo sinusal normal sob ventilação mecânica, profundamente sedados e hemodinamicamente estáveis. Foram monitorados o índice de oxigenação e pressão arterial invasiva. A variação respiratória da pressão do pulso e a variação respiratória da amplitude da onda pletismográfica na oximetria de pulso foram registradas simultaneamente batimento a batimento, e foram comparadas utilizando o coeficiente de concordância de Pearson e regressão linear. RESULTADOS: Trinta pacientes (50%) necessitaram de norepinefrina. Ocorreu uma correlação significante (K=0,66; p<0,001) entre a variação respiratória na pressão arterial de pulso e a variação respiratória na amplitude de onda pletismográfica na oximetria de pulso. A área sob a curva ROC foi de 0,88 (variando de 0,79-0,97) com melhor valor de corte de 14% para prever uma variação respiratória na pressão arterial de pulso de 13. O uso de norepinefrina não influenciou esta correlação (K=0,63; p=0,001, respectivamente). CONCLUSÕES: Uma variação respiratória na pressão do pulso arterial acima de 13% pode ser prevista com precisão por meio de uma variação respiratória da amplitude de onda pletismográfica na oximetria de pulso de 14%. O uso de norepinefrina não modifica este relacionamento.<br>OBJECTIVES: Arterial pulse pressure respiratory variation is a good predictor of fluid response in ventilated patients. Recently, it was shown that respiratory variation in arterial pulse pressure correlates with variation in pulse oximetry plethysmographic waveform amplitude. We wanted to evaluate the correlation between respiratory variation in arterial pulse pressure and respiratory variation in pulse oximetry plethysmographic waveform amplitude, and to determine whether this correlation was influenced by norepinephrine administration. METHODS: Prospective study of sixty patients with normal sinus rhythm on mechanical ventilation, profoundly sedated and with stable hemodynamics. Oxygenation index and invasive arterial pressure were monitored. Respiratory variation in arterial pulse pressure and respiratory variation in pulse oximetry plethysmographic waveform amplitude were recorded simultaneously in a beat-to-beat evaluation, and were compared using the Pearson coefficient of agreement and linear regression. RESULTS: Thirty patients (50%) required norepinephrine. There was a significant correlation (K = 0.66; p < 0.001) between respiratory variation in arterial pulse pressure and respiratory variation in pulse oximetry plethysmographic waveform amplitude. Area under the ROC curve was 0.88 (range, 0.79 - 0.97), with a best cutoff value of 14% to predict a respiratory variation in arterial pulse pressure of 13. The use of norepinephrine did not influence the correlation (K = 0.63, p = 0.001, respectively). CONCLUSIONS: Respiratory variation in arterial pulse pressure above 13% can be accurately predicted by a respiratory variation in pulse oximetry plethysmographic waveform amplitude of 14%. The use of norepinephrine does not alter this relationship

Fatores preditores precoces de reinternação em unidade de terapia intensiva

OBJETIVOS: Prever reinternação na unidade de terapia intensiva, analisando as primeiras 24 horas de pacientes após admissão em unidade de terapia intensiva. MÉTODOS: A primeira internação de pacientes de janeiro a maio de 2009 em UTI geral foi estudada. Considerou-se reinternação em unidade de terapia intensiva na mesma permanência hospitalar ou retorno em até 3 meses após alta da unidade. Pacientes que faleceram na 1ª admissão foram excluídos. Fatores demográficos, uso de assistência ventilatória e permanência na unidade de terapia intensiva por mais de 3 dias foram analisadas de forma uni e multivariada de acordo com desfecho reinternação. RESULTADOS: Quinhentos e setenta e sete pacientes foram incluídos (33 óbitos excluídos). O grupo de reinternação foi 59 pacientes, e 518 não reinternados. O tempo entre admissão índice e reinternação foi 9 (3-28) dias (18 foram readmitidos com menos de 3 dias) e 10 faleceram. Os pacientes reinternados pelo menos 1 vez na unidade de terapia intensiva apresentaram as seguintes diferenças em relação ao grupo controle: maior idade: 75 (67-81) versus 67 (56-78) anos, p<0,01; admissão por insuficiência respiratória e/ou sepse: 33 versus 13%, p<0,01; admissão clínica: 49 versus 32%, p<0,05; maior SAPS II: 27 (21-35) versus 23 (18-29) pontos, p<0,01; Charlson: 2 (1-2) versus 1 (0-2) pontos, p<0,01 e permanência maior que 3 dias na unidade de terapia intensiva na 1ª admissão (35 versus 23%, p<0,01). Após regressão logística, idade, índice de Charlson e admissão por causas respiratórias ou sepse foram independentemente associados às reinternações em unidade de terapia intensiva. CONCLUSÃO: Idade, comorbidades e admissão por insuficiência respiratória e/ou sepse estão precocemente associadas a maior risco de reinternações na unidade de terapia intensiva estudada