Resources and Strategies: How Parents Cope with the Care of a Disabled Child

Abstract

This review has considered the ways parents cope with the chronic strain and daily stressors associated with caring for and bringing up a disabled child. The review has been structured around key concepts from the process model of stress and coping. Coping resources--both personal and socio-ecological--have been described, and the notion of vulnerability when resources are not available has been considered. It is only recently that research has turned to look at the coping strategies parents use. The review drew on research using a variety of methodologies to demonstrate the range of strategies used by parents. The relationship between coping strategies and adjustment was explored, although certain methodological difficulties impede firm conclusions being drawn. Finally, the review examined whether the process model of stress and coping could be usefully operationalised to inform intervention practices with families caring for a disabled child.

Estresse e autoconceito em pais e mães de crianças com a síndrome do X-frágil

“…Por exemplo, culpa, mágoa e frustrações reforçam o estresse e interferem negativamente na adaptação e interação familiar a esta condição. Portanto, o grau de adaptação aos problemas crônicos de saúde e os recursos de coping utilizados para lidar com adversidades geradas por estas dependem da percepção subjetiva do cuidador (Beresford, 1994), do tipo de incapacitação, suas interfaces (prognóstico, dor, tratamento, sintomas, curso) e do grau de vulnerabilidade e resistência (Bradford, 1997). Nesse sentido, o modelo sistêmico considera as variáveis saúde, coping, suporte, crenças, padrões de interação, desafios da doença e características individuais como fatores de um sistema que interferem positiva ou negativamente na forma como a família lida com os estressores.…”

“…A presença de apoio social, incluindo, nesse conceito, a orientação, assim como as crenças adotadas são fatores importantes e necessários para aliviar o impacto da doença em um sistema familiar. Para Beresford (1994), o apoio conjugal é um dos mais significativos recursos de coping e está relacionado a resultados positivos na condução da doença, assim como o apoio de familiares alivia o estresse físico e emocional do cuidador. Os resultados, nesse estudo, mostraram que as mães dos dois grupos clínicos sentem menos apoio do que os pais; entretanto reconhecem que existe um apoio advindo de seus parceiros e de suas famílias, nas questões de cuidado e afeto.…”

Better Breathing or Better Living? A Qualitative Analysis of the Impact of Asthma Medication Acquisition on Standard of Living and Quality of Life in Low-income Families of Children With Asthma

“…Kurnat and Moore advocated that health providers inquire about insurance coverage and refer families to social services when necessary to help them cope with the financial burden. Beresford (1994) acknowledged the negative impact on financial resources associated with caring for a child with a chronic illness, and several researchers have observed that parents (Beresford;Englund et al, 2001) as well as the children (Gabe, Bury, & Ramsay, 2002) may feel emotionally and socially isolated. In the focus group study by Mansour et al (2000) of parents of asthmatic children, parents reported that cost was a deterrent to purchasing their child's asthma medications and found that changes to the home environment, such as purchasing air conditioners and replacing carpeting, was too expensive.…”

The Depressive Symptoms and Physical Performance of Mothers of Children with Different Types of Disability

“…Mothers of disabled children have lower physical performance and more severe depressive symptoms 5) . On the other hand, a few studies have shown that emotional and social stress is not an inevitable consequence for these parents 10,11) . Andersson 6) demonstrated that there were no differences between the mean values of anxiety and depression scores of parents of mentally retarded and non-disabled children.…”