Factors Predicting Distress Among Caregivers to Children with Chronic Medical Conditions

Canning, Robert D.; Harris, E. J.; Kelleher, Kelly J.

doi:10.1093/jpepsy/21.5.735

Cited by 107 publications

(108 citation statements)

References 20 publications

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“…Nesse sentido, a baixa incidência de práticas coercitivas no grupo crônico, revelada no presente estudo, tenderia a trazer benefícios para o desenvolvimento da criança com doença crônica. Todavia, vários estudos apontam que essas crianças teriam maior probabilidade de desenvolver problemas de comportamento do que crianças sem problemas de saúde (Canning, 1996;Heller et al, 1985). Embora a incidência de problemas de comportamento não tenha sido aqui examinada, é possível que os problemas de comportamento entre crianças com doença crô-nica estejam mais associados à permissividade dos pais também decorrente dos problemas de saúde da criança, do que à utilização de práticas coercitivas.…”

Section: Discussionunclassified

“…Hopkins, Roizen, Lindsay e Carrol (1995) encontraram em crianças com atresia de vias biliares, um tipo de doença hepática congênita, maiores riscos com relação ao temperamento, já que as deficiênci-as nutricionais que acompanham a doença podem causar irritabilidade. Em crianças com fibrose cística foram encontrados altos índices de problemas de comportamento em pesquisa que incluía mais de uma enfermidade no grupo clínico (Canning, 1996). De modo análogo, o estudo de Heller, Rafman, Zvagulis e Pless (1985) evidenciou que as crianças portadoras de enfermidades congênitas, como, por exemplo, doenças cardíacas, apresentavam significativamente mais problemas de comportamento do que o grupo controle de crianças sem problemas de saúde.…”

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“…A literatura apresenta um certo consenso em relação à noção de que as estratégias utilizadas pelos pais no processo de socialização da criança são uma função de inúmeros fatores interatuantes, dentre estes a condição de saúde da criança tem sido referida como um importante fator de mediação da qualidade da interação mãe-criança (Bradford, 1997;Sabbeth, 1984;White & cols., 1987). Neste campo de investigação, constata-se, em especial, um crescente interesse na investigação do impacto da doença crônica orgânica infantil sobre o sistema familiar bem como sobre a própria criança (Berenbaum & Hatcher, 1992;Burke & Elliot, 1999;Canning,envolvam perturbações da saúde infantil. Essa situação aponta para a necessidade de se investigar as práticas educativas utilizadas pelas mães de crianças cronicamente doentes, enquanto um importante indicador do processo de socialização.…”

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A doença crônica orgânica na infância e as práticas educativas maternas

Piccinini

Castro

Alvarenga

et al. 2003

Estud. psicol. (Natal)

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A interação mãe-criança e suas implicações para o processo de socialização infantil constituem um tópico de grande interesse das pesquisas em psicologia do desenvolvimento. Um dos principais aspectos investigados acerca da interação da díade refere-se às estratégias empre- ResumoEstudos apontam que a presença de doença crônica orgânica na infância pode se constituir num importante fator de mediação da qualidade da interação mãe-criança. Entretanto, poucos estudos investigam as práticas educativas maternas em crianças portadoras de doença crônica. Os cuidados diários exigidos pelo tratamento da enfermidade, bem como a fragilidade física e emocional da criança podem afetar as práticas educativas maternas. Participaram do estudo 40 mães, metade das quais eram mães de crianças portadoras de doença crônica orgânica e as demais de crianças sem doença crônica. As crianças eram de ambos os sexos e tinham entre 03 e 05 anos de idade. Os participantes foram recrutados em hospitais e pré-escolas públicas. Uma entrevista semi-estruturada foi utilizada para se investigar as práticas educativas maternas, examinadas através de análise de conteúdo. Os resultados revelaram uma tendência marginalmente significativa no grupo com doença crônica a utilizar um número menor de práticas coercitivas. Além disso, houve uma diferença significativa entre os grupos quanto ao uso de punição física e privação/castigo, indicando que as mães de crianças com doença crônica utilizaram com menor freqüência este tipo de prática. Os resultados apóiam a expectativa inicial de que as mães de crianças com doença crônica seriam menos coercitivas quando comparadas às mães do outro grupo.Palavras-chave: práticas educativas maternas; doença crônica infantil; infância AbstractThe physical chronic disease in childhood and the mother's childrearing practices. . Studies indicate that the presence of physical chronic disease in childhood may constitute an important factor to the quality of mother-child interaction. However, few studies investigate the childrearing practices in children with physical chronic disease. The daily care demand by the disease treatment as well as the child physical and emotional fragility may affect the childrearing practices. Fourty mothers participated in this study, half of them with a child with physical chronic disease and the other with a child without this condition. The children were of both sexes, 3 to 4 years old. The participants were selected in public hospitals and schools. A semi-structured interview was used to investigate the mother's childrearing practices, examined by content analysis. The results show a marginally significant difference showing that the group of mothers of the chronic disease children uses coercive practices less frequently. Moreover, there was a significant difference between the groups in relation to the use of physical punishment and privation/penalty, suggesting that mothers of chronic disease children use less frequently this type of practice. The results support the initial hypothesis that mot...

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A doença crônica orgânica na infância e as práticas educativas maternas

Piccinini

Castro

Alvarenga

et al. 2003

Estud. psicol. (Natal)

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“…One way to understand the negative impact of children's chronic conditions on parents' lives is through the concept of the burden of caregiving, which is defined as a caregiver's perceived responsibilities and limitations that are inflicted upon the self and the family (Canning, Harris, & Kelleher, 1996). For parents of chronically ill children, the tasks of parenting and caregiving go hand in hand as these parents are also the main informal health caregivers.…”

Section: Description Parents' Qol In the Context Of Pediatric Health mentioning

confidence: 99%

Parents with Asthmatic Children, Quality of Life

Crespo¹,

Silva²

2014

Encyclopedia of Quality of Life and Well-Being Research

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SynonymsCaregivers' health-related quality of life with asthmatic children; Caregivers' quality of life with asthmatic children; Parents' health-related quality of life with asthmatic children; Parental quality of life with asthmatic children. DefinitionAsthma is the most prevalent chronic health condition in childhood. The quality of life (QoL) of asthmatic children and their parents/caregivers has been increasingly acknowledged as an important outcome in pediatric asthma health care. Although children's QoL has been the main focus of research, scholars and clinicians in the field of pediatric chronic conditions have also started to take an interest in how parents perceive their own QoL. In this relatively new area of inquiry, research has conceptualized and assessed parents' QoL in diverse ways. Consequently, scientific literature on parents' QoL is heterogeneous, and a clear or consensual definition for this construct is still elusive.Two main approaches have been developed to study the QoL of parents with children who have chronic conditions, including asthma. A generic approach has examined parents' QoL according to the universal definition provided by the World Health Organization, which is that QoL is a multidimensional construct covering the physical health, level of independence, psychological state, social relationships and interactions with the environment, as subjectively perceived by the individual embedded in a cultural context (The WHOQOL Group, 1998). A specific approach, which is applied in the majority of studies, has looked at the perceived impact of a child's disease and treatments on

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“…Parental caregiving for children with chronic health conditions is a complex experience, encompassing both negative and positive dimensions, such as caregiving burdens and uplifts (Green, 2007;Larson, 2010). While the deleterious effects of caregiving burden on parents' adaptation outcomes are documented in pediatric literature for chronic medical conditions in general (Canning, Harris, & Kelleher, 1996), and for asthma in particular (Crespo, Carona, Silva, Canavarro, & Dattilio, 2011;Fiese, Wamboldt, & Anbar, 2005), the associations between caregiving uplifts and adaptation outcomes remain a neglected research topic. Even if some authors have suggested a positive impact of perceived benefits of caregiving on parents' emotional and physical health (Green, 2007), and some evidence has been gathered for the buffering effect of caregiving uplifts on the associations between caregiving burden and parents' quality of life (QoL) when caring for a child with a disability (Carona, Pereira, Moreira, Silva, & Canavarro, 2013), the examination of the role of positive coping strategies on these parental adaptation processes has not been yet conducted.…”

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Parental Positive Meaning-Making When Caregiving for Children With Asthma

Silva

Carona

Crespo

et al. 2014

Psicologia, Saúde & Doenças

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-Providing informal care to children/adolescents with chronic conditions has been associated with high levels of caregiving burden and impaired quality of life (QoL); however, parents can also experience uplifts which, by facilitating the attribution of positive meanings to caregiving, may contribute to better adaptation outcomes. The present study aimed at examining the direct and indirect links, via positive reframing as a coping strategy, between caregiving uplifts and quality of life (QoL) of parents who have a child/adolescent with asthma, as well as the invariance of the mediation model across children's age groups and asthma severity levels. A total of 180 parents of children/adolescents aged 8-18 reported their experience of caregiving uplifts (Revised Burden Measure), the use of positive reframing coping (Brief Cope) and their QoL (WHOQOL-Bref). Structural equation modeling showed a good fit for the mediation model (χ 2 /df=1.74, CFI=.95, RMSEA=.06), which explained 14% of the variability of parents' QoL. The caregiving uplifts were positively associated with positive reframing coping (β=.19, p=.02), which in turn was positively associated with QoL (β=.36, p<.01). No direct effect of uplifts on parents' QoL was found, but the indirect effect via positive reframing coping was statistically significant (β=.07, BC95%CI=.01/.14). Multi-group analyses demonstrated the strong structural invariance of the model across age groups (Δχ 2 =.89, p=.35) and asthma severity levels (Δχ 2 =1.91, p=.17). These results suggest that psychological interventions focused on recognizing and valuing caregiving uplifts and on positive reappraisal of the stressful situation may support more adaptive coping processes and improve parents' QoL. Keywords-Caregiving uplifts, Coping, Parents/ family caregivers, Pediatric asthma, Positive reframing, Quality of life ______________________________________________________________________ SIGNIFICAÇÕES PARENTAIS POSITIVAS NA PRESTAÇÃO DE CUIDADOS A CRIANÇAS/ ADOLESCENTES COM ASMARESUMO -A prestação de cuidados a crianças/adolescentes com condições crónicas tem sido associada a níveis elevados de desgaste e menor qualidade de vida (QdV); no entanto, os pais podem também experienciar gratificações que, facilitando uma atribuição de

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Factors Predicting Distress Among Caregivers to Children with Chronic Medical Conditions

Cited by 107 publications

References 20 publications

A doença crônica orgânica na infância e as práticas educativas maternas

A doença crônica orgânica na infância e as práticas educativas maternas

Parents with Asthmatic Children, Quality of Life

Parental Positive Meaning-Making When Caregiving for Children With Asthma

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