Objective: to analyze the effect of parental mutuality on the quality of life related to the health of mothers who care for children with special health needs. Method: an observational, analytical and cross-sectional study with a quantitative approach. The following instruments were applied to 181 caregiving mothers: The Medical Outcomes Study 36-Item Short Form and Family Management Measure (Parental Mutuality subscale). In the statistical analysis, Spearman’s correlation and univariate and multivariate linear regression were used. Results: the total score of parental mutuality was 30.8, indicating a satisfactory perception of the caregiving mother about the way the couple shares decisions regarding the care of the child. In the multivariate regression analysis, parental mutuality maintained a statistically significant association with the domains of pain, social aspects and emotional limitations of quality of life related to health (p=<0.001, 0.003, 0.002), respectively. Conclusion: parental mutuality has a positive effect on some domains of quality of life related to health. It is recommended to plan actions aimed at strengthening the complicity and connection between the couple, especially in matters related to the care of the child with special health needs.

Objectives: This study analyzed the stress experienced by family caregivers of children with special healthcare needs and identified associated factors. Methods: A case–control study was conducted with the “cases” being caregivers of children with chronic conditions and the “controls” being caregivers of healthy children. Recruitment was carried out via social media and complemented by snowball sampling. A sociodemographic questionnaire and the Perceived Stress Scale were applied, with four saliva samples collected in one day (at 8:00 am, 30 min later, and 4 and 12 h later). The Area Under the Curve for total daily cortisol production was calculated using the log-trapezoidal method. The Wilcoxon test and repeated-measures ANOVA were used for statistical analysis. Results: In total, 100 caregivers participated, with 50 in the “case” group and 50 in the “control” group. Significant differences in stress scores and salivary cortisol levels were observed between the groups, with the other variables constant. In both groups, cortisol levels followed a typical circadian pattern. Family income was associated with perceived stress. Caregiver age significantly explained perceived stress (p = 0.0098) and total cortisol production. Caregiver occupation also influenced cortisol results. Conclusions: Caregivers of children with chronic conditions showed higher perceived stress and lower cortisol production compared to those of healthy children. Family income, occupation, and caregiver age were associated with stress.

Resumo Objetivo analisar os fatores associados ao apoio social às mães de crianças que necessitam de cuidados contínuos e complexos. Método estudo observacional, analítico e transversal, de abordagem quantitativa. A coleta de dados ocorreu nos ambulatórios de um hospital pediátrico localizado no interior do estado de São Paulo. Participaram do estudo 36 mães, que responderam a um instrumento de caracterização e ao Medical Outcomes Study- Social Support Survey. Para análise estatística foram utilizados os testes Mann-Whitney, Kruskal-Wallis e Correlação de Spearman. Seguiram-se os preceitos éticos de pesquisas que envolvem seres humanos. Resultados o apoio social afetivo, material e de interação social apresentaram escores satisfatórios (acima de 80 pontos). Os escores das dimensões informação e emocional foram 78,06 e 78,33, respectivamente. A variável idade materna apresentou correlação negativa com o apoio social emocional (0,040) e de informação (0,009). Conclusão e implicações para a prática as mães, em especial as mais velhas, recebem menos apoio de pessoas que possam lhe orientar e dar conselhos, bem como de alguém de confiança para falar sobre seus problemas. Tal resultado pode subsidiar o planejamento de estratégias de intervenção com famílias, a fim de fortalecer o apoio social.

Objective: to analyze the use of religious-spiritual coping among family members of children who require continuous and complex care Methods: a mixed-methods study was developed in Brazil with family members of children requiring continuous and complex care. In the quantitative stage, 51 family members answered a demographics survey and the Brief Scale for Spiritual/Religious Coping. In the qualitative stage, 15 family members answered an open-ended question about the practice of religiosity and spirituality in their daily lives. Results: family members’ age and number of residents in the household were significantly associated with religious-spiritual coping. Three thematic categories emerged from the statements, revealing an experience marked by trust in God’s designs and relief from suffering provided by faith. Conclusion: family members in this study used positive religious-spiritual coping strategies more frequently, especially those from smaller families. However, younger family members used negative religious-spiritual coping strategies more frequently.

Objetivo: analisar o estresse entre mães de crianças com necessidades especiais de saúde e identificar os fatores sociodemográficos relacionados. Método: estudo transversal e de abordagem quantitativarealizado junto a mães de crianças com necessidades especiais de saúde em seguimento em um ambulatório de média complexidade que desenvolve atividades de reabilitação a crianças com condições que afetam o desenvolvimento neuromotor e sensorial de um município do interior do estado de São Paulo.A coleta de dados ocorreu remotamente, entre março e julho de 2021, mediante aplicação via Google Forms do instrumento de caracterização sociodemográfica e da Perceived Stress Scale, cuja pontuaçãovaria de zero a 56 pontos. Para análise dos dados, utilizaram-se os seguintes testes estatísticos: Mann-Whitney, Kruskal-Wallis, correlação de Spearman eregressão linear simples e múltipla. Resultados:participaram 57 mães com idade média de 34,4 anos. O nível médio de estresse percebido foi de 30,56, mínima 12 e máxima 52. Os fatores sociodemográficos associados com o estresse foram: idade materna (p<0,001), situação conjugal (p<0,001) e número de filhos (p=0,019). Conclusão: as mães com maior nível de estresse percebido foram: as com menor idade, sem companheiro e com maior número de filhos.

Objective To identify factors associated with stress among family caregivers of children and adolescents with Down syndrome. Method This was a cross-sectional, analytical, observational study with a quantitative approach. Data were collected in participants’ homes using a sociodemographic and clinical characterization instrument, the Perceived Stress Scale, and salivary cortisol collection upon awakening. Bivariate and multivariate statistical analyses were performed to identify associations. Results A total of 30 family members participated, including 24 mothers, five fathers, and one sister. Of these, 18 (60%) reported experiencing at least one stressful event in the previous 30 days. The mean perceived stress score was 31.9 points. Mean salivary cortisol upon awakening was 0.44 µg/dL, which is within the normal range for the morning period. A statistically significant association was found between salivary cortisol levels upon awakening and occupation. Conclusion A tendency toward low salivary cortisol levels upon awakening was observed among family caregivers. Family members with paid employment had higher salivary cortisol levels than caregivers without employment.