Factores asociados al estrés del cuidador primario de niños con autismo: Sobrecarga, psicopatología y estado de salud

The objective of this study was to evaluate if caregivers were overloaded when their children were diagnosed with autism disorder, how it may influence their mental and physical health. 40 caregivers have been participating in this study, mainly mothers. The parameters studied include sociodemographic factors, caregivers burden overload (Zarit Scale, adapted to the Spanish language), Psychopathology (SCL-90) and health status (SF-60). The results indicate that caregivers were overloaded, and in a worse state of mental and physical health compared to the general population. A strong positive correlation was observed between overwhelmed carers and the evaluated health and pathopsicological parameters. These results are in accordance with previous findings that were published by other groups, supporting the idea that specific health programs are needed for caregivers of children with chronic diseases.

Avaliação comportamental de crianças com Síndrome do Respirador Bucal

A Síndrome do Respirador Bucal (SRB) ocasiona características físicas e comportamentais que interferem na qualidade de vida da criança. O Transtorno do Déficit de Atenção e Hiperatividade (TDAH) pode estar relacionado à respiração bucal no indivíduo, bem como a presença de Distúrbios Respiratórios do Sono (DRS). Por outro lado, estudos indicam que a adenotonsilectomia reduz a ocorrência de comportamentos sugestivos de TDAH em portadores de SRB, bem como produz melhora significativa nos DRS. Pretendeu-se caracterizar a condição sociodemográfica e de risco e analisar padrões comportamentais indicadores de TDAH e os hábitos de sono de crianças com diagnóstico de Síndrome do Respirador Bucal, observados antes e após a realização de cirurgia de adenoidectomia, tonsilectomia ou adenotonsilectomia. Participaram 44 crianças, de ambos os gêneros, entre dois e 12 anos de idade, atendidas pelo Serviço de Otorrinolaringologia de um hospital universitário, assim como seus cuidadores e professores. A coleta de dados foi realizada mediante aplicação de: (1) Roteiros de entrevistas denominados Informações sobre a família e a criança e História desenvolvimental e médica, aplicados com os cuidadores; (2) Lista de Verificação Comportamental para Crianças – versão para pais (CBCL) e dos critérios para diagnóstico de TDAH do DSM-IV; (2) Lista de Verificação Comportamental para Crianças – versão para professores (TRF); (3) Inventário dos hábitos de sono para crianças pré-escolares e Questionário sobre o comportamento do sono, para escolares; (4) Avaliação comportamental pós-cirúrgica, utilizando-se o CBCL e os Inventários do sono, após dois meses da cirurgia; e (5) Entrevista devolutiva. Os respiradores bucais em sua maioria: (a) eram crianças em período escolar; (b) entre sete e nove anos de idade; (c) do gênero feminino; (d) seu principal cuidador tinha o Ensino Médio Completo; (e) renda familiar mensal entre um e dois salários mínimos; (f) constituição familiar original; e, (g) encontravam-se em risco psicossocial moderado. Observou-se que a maioria das crianças deste estudo teve uma gestação dentro de padrões considerados como normais e seu nascimento se deu de forma adequada; no entanto, uma parcela de respiradores bucais desta amostra ficou cianótica durante ou imediatamente após o parto e apresentou problemas respiratórios nos primeiros meses de vida. A respeito do temperamento do bebê no primeiro ano de vida, grande parte teve dificuldade para dormir, em ser mantido ocupado e foi superativo. A maioria dos marcos desenvolvimentais ocorreu em um período considerado dentro dos padrões típicos do desenvolvimento infantil. Os problemas de saúde mais frequentes foram problemas de apetite e problemas de sono. Tanto as crianças pré-escolares quanto as escolares apresentaram melhoras nos comportamentos característicos do TDAH após a cirurgia, de acordo com dados do CBCL (p=0,723). A maioria dos itens do Inventário dos hábitos de sono para crianças pré-escolares teve redução na frequência dos hábitos inadequados e aumento dos adequados. No Questionário sobre o comportamento do sono, uma minoria apresentou problemas de sono na avaliação pós-cirúrgica e a maior parte dos problemas de sono sofreu redução de frequência. As maiores reduções ocorreram em movimenta-se muito enquanto dorme e ronca enquanto dorme (p=0,000). Sugere-se a avaliação multidisciplinar preventiva da respiração bucal e a incorporação de um grupo controle em estudos futuros, composto por indivíduos respiradores nasais.

Children as caregivers

Caregiving is usually associated with adults’ responsibilities. Official statistics and research have demonstrated, however, that many children and young people in the global North and South have substantial, regular caring responsibilities for family members with chronic illnesses, impairments or other care needs. This chapter conceptualises children’s roles as ‘caregivers’ and the care work they do. It then analyses the available evidence on outcomes of children’s caregiving and the factors and processes influencing their involvement. While research reveals that caregiving may have positive as well as negative outcomes for children’s well-being, formal and informal safety nets are needed, especially in resource-limited settings, to alleviate children’s care work. Children’s and families’ experiences suggest that social protection measures and support for those being cared for as well as those providing care would help to ensure that caregiving does not have long-term negative impacts on children’s personal development, education, health, family relations, peer interactions, social participation, employment opportunities and socially expected transitions to adulthood.

Guardians of Generations: African American Grandparent Caregivers for Children of HIV/AIDS Infected Parents

Grandparents, particularly, grandmothers in the African American community have historically provided needed care for their grandchildren (Crewe, 2003). Before there was a child welfare system that addressed the needs of African American children, there were grandmothers who served as the safety net for their biological, informally adopted grandchildren, and other minor relatives. They cared for grandchildren and others whose birth parents were unable or unwilling to care for them. For families of color, HIV/AIDS is an emerging issue that is contributing to the growing numbers of grandparent-headed households. And once again, many African American grandmothers have accepted the challenge of holding their families together. This article addresses the HIV/AIDS public health challenge in the African American community with specific focus on its impact on older grandparents responsible for raising children of infected biological parents. It advocates for a model that continues to strengthen the Children’s Bureau investment in kinship care through integrating the needs of children and their aging caregivers.

Assessing Temperament as a Predictor of Distress at Anesthesia Induction Using the Children’s Behavior Questionnaire Short Form

Thesis (Master's)--University of Washington, 2016-06

The Impact of Geographic Mobility on Canadian Military families and their Children’s Access Special Education Services

To achieve academic success, children with learning-related disabilities often receive special education supports at school. Currently, Canada does not have a federal department or integrated national system of education. Instead, each province and territory has a separate department or ministry that is responsible for the organization and delivery of education, including special education, at the elementary level. At the macro (national) level, inclusive education is the policy across Canada. However, each province and territory has its own legislation, definitions, and policies mandating special education services. These variations result in little consistency at the micro (individual school) level. Differences between eligibility requirements, supports offered, and delivery methods may present challenges for highly mobile families who must navigate new special education systems on behalf of their children with medical or learning challenges. One of the defining features of the Canadian military lifestyle is geographic mobility. As a result, many families are tasked with navigating new school systems for their children, a task that may be more difficult when children require special education services. The purpose of this study is to explore the impact of geographic mobility on Canadian military families and their children’s access to special education services. The secondary objective was to gain insight into supports that helped facilitate access to services, as well as supports that participants believe would have helped facilitate access. A qualitative approach, interpretive phenomenological analysis (IPA), was employed due to of its focus on individuals’ experiences and their understandings of a particular phenomenon. IPA allowed participants to reflect on the significance of their experiences, while the researcher engaged with these reflections to make sense of the meanings associated with their experiences. Nine semi-structured interviews were conducted with civilian caregivers who have a child with special education needs. An interview guide and probes were used to elicit rich, detailed, first-person accounts of their experiences navigating new special education systems. The main themes that emerged from the participants’ combined experiences addressed the emotional components of experiencing a transition, factors that may facilitate access to special education services, and career implications associated with accessing and maintaining special education services. Findings from the study illustrate that Canadian families experience many, and often times severe, barriers to accessing special education services after a posting. Furthermore, the impacts reported throughout the study echo the existing American literature on geographic mobility and access to special education services. Building on the literature, this study also highlights the need for further research exploring factors that create unique barriers to access in a Canadian context, resulting from the current special education climate, military policies, and military family support services.

Indirect Effects of Parental Coping on Children’s Psychosocial Adjustment in the Context of Pediatric Cancer

Thesis (Ph.D.)--University of Washington, 2016-08

[factors Associated With Satisfaction With Life Among Elderly Caregivers And Non-caregivers].

This article seeks to investigate associations between satisfaction with life and sociodemographic variables, health conditions, functionality, social involvement and social support among elderly caregivers and non-caregivers, as well as between satisfaction and the intensity of stress in the caregiver group. A sample of 338 caregivers was selected according to two items of the Brazilian version of the Elders Life Stress Inventory. A comparison-group of elderly non-caregivers was selected at random, with a similar gender, age and income profile. Data were derived from self-reported questionnaires and scales. Elderly caregivers with low levels of satisfaction and high levels of stress revealed more symptoms of insomnia, fatigue, diseases and worse IADL performance. Those with greater satisfaction and less stress revealed a good level of social support. Insomnia, depression and fatigue were associated with low satisfaction among caregivers, and with fatigue, depression and low social support among non-caregivers. It was considered relevant that instrumental, psychological and informative support can improve the quality of life and the quality of care provided by elderly caregivers, especially if they are affected by unfavorable health and psychosocial conditions and low satisfaction with life.

Fatigue in Brazilian cancer patients, caregivers, and nursing students: a psychometric validation study of the Piper Fatigue Scale-Revised

The objective of this study was to validate the Piper Fatigue Scale-Revised (PFS-R) for use in Brazilian culture. Translation of the PFS-R into Portuguese and validity and reliability tests were performed. Convenience samples in Brazil we as follows: 584 cancer patients (mean age 57 +/- 13 years; 51.3% female); 184 caregivers (mean age 50 +/- 12.7 years; 65.8% female); and 189 undergraduate nursing students (mean age 21.6 +/- 2.8 years; 96.2% female); Instruments used were as follows: Brazilian PFS, Beck Depression Inventory (BDI), and Karnofsky Performance Scale (KPS). The 22 items of the Brazilian PFS loaded well (factor loading > 0.35) on three dimensions identified by factor analysis (behavioral, affective, and sensorial-psychological). These dimensions explained 65% of the variance. Internal consistency reliability was very good (Cronbach`s alpha ranged from 0.841 to 0.943 for the total scale and its dimensions). Cancer patients and their caregivers completed the Brazilian PFS twice for test-retest reliability and results showed good stability (Pearson`s r a parts per thousand yenaEuro parts per thousand 0,60, p < 0,001). Correlations among the Brazilian PFS and other scales were significant, in hypothesized directions, and mostly moderate contributing to divergent (Brazilian PFS x KPS) and convergent validity (Brazilian PFS x BDI). Mild, moderate, and severe fatigue in patients were reported by 73 (12.5%), 167 (28.6%), and 83 (14.2%), respectively. Surprisingly, students had the highest mean total fatigue scores; no significant differences were observed between patients and caregivers showing poor discriminant validity. While the Brazilian PFS is a reliable and valid instrument to measure fatigue in Brazilian cancer patients, further work is needed to evaluate the discriminant validity of the scale in Brazil.

Children’s respiratory health and daily particulate levels in ten non-urban communities

We conducted a study to assess the association between the acute respiratory health of children and the levels of particulates in communities near and away from active opencast coal mines. The study enrolled children aged 1–11 years from the general population of five socioeconomically matched pairs of nonurban communities in northern England. Diaries of respiratory events were collected for 1405 children, and information was collected on the consultations of 2442 children with family/general practitioners over the 6-week study periods during 1996–1997, with concurrent monitoring of particulate levels. The associations found between daily PM10 levels and respiratory symptoms were frequently small and positive and sometimes varied between communities. The magnitude of these associations were in line with those from previous studies, even though daily particulate levels were low, and the children were drawn from the general population, rather than from the population with respiratory problems. The associations among asthma reliever use, consultations with general practitioners, and daily particulate levels were of a similar strength but estimated less precisely. The strength of association between all respiratory health measures and particulate levels was similar in communities near and away from opencast coal mining sites.

Dental caries in cerebral palsied individuals and their caregivers` quality of life

To study the correlation between caries experience in individuals with cerebral palsy (CP) and the quality of life of their primary caregivers. Sixty-five non-institutionalized individuals, presenting CP, aged 2-21 years old, were evaluated for caries experience. Their respective caregivers aged 20-74 years old answered the Short Form 36 (SF-36) health survey and Independence Measure for Children. Fifty-eight non-disabled individuals (ND group), aged 2-21 years old, and their respective caregivers, aged 25-56 years old, were submitted to the same evaluation process as the CP group. Primary caregivers of CP individuals exhibited significantly lower scores than the ND group in all subscales of the SF-36 health survey questionnaire: physical functioning, physical role, bodily pain, general health, vitality, social functioning, emotional role and mental health. The CP group presented significantly higher values for the Decayed, Missed and Filled (DMF-T) index than the ND group and a significant negative correlation was obtained between the SF-36 and DMF-T index. The results suggest that caregivers of CP individuals exhibited worse quality of life than those of the non-disabled. A negative correlation exists between caries experience of CP individuals and their caregivers` quality of life.

Validation of the Brazilian version of the quality of life scale for patients with Alzheimer`s disease and their caregivers (QOL-AD)

Quality of life (QOL) has been extensively studied in clinical trials and in research on chronic degenerative diseases and dementia. The aim of this study was to assess the reliability and construct validity of the Brazilian version of the QOL scale in Alzheimer`s disease (AD; QOL-AD). The QOL-AD was administered to 60 patients with mild or moderate AD and to their caregivers. The construct validation was accomplished through correlations amongst total scores of patients` and caregivers` reports on patients` quality of life (PQOL and C-PQOL, respectively), and data related to cognitive impairment, depressive symptoms, functional performance, behavioral disturbances and a generic instrument of quality of life (WHOQOL-brief), as well as correlation of total score of caregivers` reports on their own quality of life (CQOL) with the measurements cited above, QOL-AD patient reports, and depressive symptoms. The reliability was high for PQOL, C-PQOL, and CQOL versions (Cronbach`s alpha = 0.80, 0.83, and 0.86, respectively). We observed significant correlations in the construct validity of all three versions regarding the variables associated with the disease and also with WHOQOL-brief. The scale took, on average, six min for each version. The results indicate reliability and construct validity of the Brazilian version of the QOL-AD in the studied sample.

Irrational schematic beliefs and psychological distress in caregivers of people with traumatic brain injury

Objective: To investigate the relation between irrational schematic beliefs and psychological distress in caregivers of persons with traumatic brain injury (TBI). Design: Cross-sectional mail survey. Participants: One hundred sixteen caregivers of persons with TBI living in the Australian states of Victoria and Queensland who were members of community support groups and brain injury associations. Measures: The Irrational Beliefs Inventory, Brief Symptom Inventory, income satisfaction, degree of personality and behavior change in the TBI individual, and injury severity. Results: Hierarchical regression analyses showed that after controlling for the effects of characteristics of the caregiving situation and the individual with TBI, greater adherence to irrational beliefs was related to higher levels of global psychological distress. Specifically, irrational beliefs related to Worrying were associated with all areas of psychological distress. Conclusion: Results support the cognitive theory proposal that irrational beliefs play an important role in the adaptation to TBI caregiving. Findings suggest the inclusion of cognitive therapy strategies in interventions for caregivers.