"Not having a minute of self-distancing during the social distancing is exhausting": a qualitative study on the perspective of caregivers of youth with type 1 diabetes during the COVID-19 pandemic.

OBJECTIVE: To investigate the impact of the COVID-19 pandemic on caregivers of youth with type 1 diabetes. METHODS: We performed a qualitative research based on an open-ended questionnaire that was conducted through an online platform for primary caregivers of children and adolescents with type 1 diabetes. Participants were asked to describe the impact of the COVID-19 outbreak on their caring for youth with diabetes, as well as the emotional burden that it has brought to their personal lives. Interview responses were coded and stratified by youth age: ≤ 12 years (youth aged ≤ 12 years) and between 13 and 18 years (youth aged > 12 years). The connections between the responses were identified based on either positive or negative content of the reported experience. Data were analyzed in accordance with an inductive reasoning methodology. RESULTS: A total of 318 participants (mean age of 40.3 ± 8.1 years old) were included, representing caregivers of youth aged 11.7 ± 4.3-year-old with diabetes duration of 5.1 ± 3.8 years. The preponderance of negative feelings was noteworthy. Regarding diabetes care, more than 80% of participants reported concern and anxiety about the changes in habits that accompanied the pandemic. Also, more than half of caregivers regretted the isolation of their youth, factors that were associated with greater difficulty in achieving good glycemic control. Regarding the personal burden experienced, the negative impact of uncertainties and concerns about the COVID-19 were present in almost all participants. CONCLUSION: The period of pandemic may lead to exhaustion in caregivers of youths with type 1 diabetes, which reflects the need for mental health support strategies to help those families.

Spirituality alleviates the burden on family members caring for patients receiving palliative care exclusively.

BACKGROUND: Spirituality can give meaning to life, providing support and guidance in complex situations. Despite its importance in palliative care, the role of spirituality for family caregivers of patients under exclusive palliative care has not received enough attention in the literature. We aimed to address the correlation between spirituality and the emotional burden of family members of patients under exclusive palliative care. METHODS: This transversal study was conducted in a tertiary private teaching hospital, in São Paulo, Brazil. The study comprised family members of patients receiving palliative care exclusively. Only one caregiver who cared for the patient for at least 2 months was invited to participate. Family members answered the following questionnaires: WHOQOL spirituality, religiousness and personal beliefs (SRPB), Zarit Burden Interview (ZBI) and Self-Reporting Questionnaire (SRQ-20). They were excluded if patients were residing in a Long Stay Institution. Continuous variables were expressed by median and quartiles and analyzed with the Kruskal-Wallis test with Muller-Dunn post-test adjusted by Bonferroni or with the Mann-Whitney test for two groups. We used multivariable linear regression to identify independent predictors of caregiver burden. RESULTS: A total of 178 family members were interviewed in a median of 8 [4-13.25] days after patient admission. Almost 40% of families presented high score of burden. Faith and Meaning in Life were the facets that scored the highest, with a median of 4.50 [4.00-5.00] for both facets. There was an inverse correlation between Zarit score and all of the WHOQOL-SRPB facets, indicating that the lower the spirituality, the greater the emotional burden. Inner peace was the strongest protective factor associated with burden. CONCLUSIONS: Psycho-socio-spiritual interaction can improve the coping ability of family caregivers of patients under exclusive palliative care, addressing a critical gap in the provision of holistic palliative care services.

Emotional Burden in Parents of Children with Trisomy 21: Descriptive Study in a Colombian Population / Cansancio emocional en padres de niños con trisomía 21: Estudio descriptivo en una población colombiana

The role of a parent with a disabled child can be highly demanding. There are few publications concerning parental emotional exhaustion in Latin America. The present prevalent case-controlled study evaluated the frequency of emotional exhaustion in 103 parental couples of parents of children with Down Syndrome (DS); likewise the study explores the rate of emotionally exhausted and depressed mothers in comparison with the fathers. This outcome was measured using a modified and validated version of the Maslach Burnout Inventory. The results showed a prevalence of emotional exhaustion of 52.64%. In the matched-pair analysis we found a higher chance of exhaustion in mothers in comparison with their partners.

El trabajo de un padre con un hijo con discapacidad puede llegar a ser muy exigente. Existen pocas publicaciones que hacen referencia al agotamiento emocional de los padres de niños con discapacidades en América Latina. El presente estudio de casos y controles prevalentes describe la frecuencia de agotamiento emocional en 103 parejas de padres de niños con síndrome de Down. También describe las diferencias en el agotamiento emocional y depresión entre padres y madres. Este resultado se midió usando una versión modificada y validada del Maslach Burnout Inventory. Los resultados mostraron una prevalencia de agotamiento emocional del 52,64%. En el análisis apareado encontramos una mayor probabilidad de agotamiento en las madres en comparación con sus parejas.

Sobrecarga emocional e qualidade de vida em mães de crianças com erros inatos do metabolismo / Emotional burden and quality of life of mothers with children having inborg errors of metabolism

Este estudo objetivou investigar a sobrecarga emocional e a percepção da própria qualidade de vida em mães de crianças com Erros Inatos do Metabolismo (EIM). Participaram 21 mães de crianças com EIM, com comprometimento neurológico grave, de ambos os sexos, com idade até dez anos. A coleta de dados foi realizada por meio dos instrumentos WHOQOL-Bref e Burden Interview. Os dados foram analisados estatisticamente e comparados. Foi observado que os cuidados com a criança com EIM interferem negativamente na qualidade de vida das mães, sobretudo no domínio relações sociais, acarretando uma sobrecarga emocional, de tal forma que quanto maior a sobrecarga, mais baixa a percepção sobre a própria qualidade de vida.

This study aims to investigate the perception of women having children with Inborn Errors of Metabolism (IEM) about the experienced emotional burden and their own quality of life. The participants were 21 mothers of children with IEM, with serious neurological injury. The children were of both sexes, up to ten years old. Data collection was accomplished through instruments WHOQOL-Bref and Burden Interview. The data were statistically analyzed and compared. The care of children with IEM interfere in a negative way in the quality of life of the mother, especially in the domain of their social relations, resulting in an emotional burden; the greater the burden, the lower the perceived quality of life.

Sobrecarga emocional e qualidade de vida em mães de crianças com erros inatos do metabolismo / Emotional burden and quality of life of mothers with children having inborg errors of metabolism

Este estudo objetivou investigar a sobrecarga emocional e a percepção da própria qualidade de vida em mães de crianças com Erros Inatos do Metabolismo (EIM). Participaram 21 mães de crianças com EIM, com comprometimento neurológico grave, de ambos os sexos, com idade até dez anos. A coleta de dados foi realizada por meio dos instrumentos WHOQOL-Bref e Burden Interview. Os dados foram analisados estatisticamente e comparados. Foi observado que os cuidados com a criança com EIM interferem negativamente na qualidade de vida das mães, sobretudo no domínio relações sociais, acarretando uma sobrecarga emocional, de tal forma que quanto maior a sobrecarga, mais baixa a percepção sobre a própria qualidade de vida.(AU)

This study aims to investigate the perception of women having children with Inborn Errors of Metabolism (IEM) about the experienced emotional burden and their own quality of life. The participants were 21 mothers of children with IEM, with serious neurological injury. The children were of both sexes, up to ten years old. Data collection was accomplished through instruments WHOQOL-Bref and Burden Interview. The data were statistically analyzed and compared. The care of children with IEM interfere in a negative way in the quality of life of the mother, especially in the domain of their social relations, resulting in an emotional burden; the greater the burden, the lower the perceived quality of life.(AU)