Caregiving process and caregiver burden: Conceptual models to guide research and practice

Abstract

BackgroundParental care for a child with a developmental disability is an enormous responsibility, one that can far exceed that of typical parental care. While most parents adapt well to the situation of caring for a child with a disability, some do not. To understand parents' adaptations to their children's disabilities, the complex nature of stress processes must be accounted for and the constructs and factors that play a role in the caregiving must be considered.DiscussionEvidence suggests that there is considerable variation in how caregivers adapt to their caregiving demands. Many studies have sought to qualify the association between caregiving and health outcomes of the caregivers. Contextual factors such as SES, child factors such as child behaviour problems and severity of disability, intra-psychic factors such as mastery and self-esteem, coping strategies and social supports have all been associated with psychological and/or physical outcome or parents or primary caregivers. In reviewing these issues, the literature appears to be limited by the use of traditional analytic approaches which examine the relationship between a factor and an outcome. It is clear, however, that changes to single factors, as represented in these studies, occur very rarely even in the experimental context. The literature has also been limited by lack of reliance on specific theoretical frameworks.SummaryThis conceptual paper documents the state of current knowledge and explores the current theoretical frameworks that have been used to describe the caregiving process from two diverse fields, pediatrics and geriatrics. Integration of these models into one comprehensive model suitable for this population of children with disabilities and their caregivers is proposed. This model may guide future research in this area.

Quality of life of children with neurological impairment who receive a fundoplication for gastroesophageal reflux disease

“…Contrary to an emerging body of literature in pediatrics that describes a positive correlation between the health of children with chronic illnesses and their caregivers' quality of life, 12,42 we did not find large immediate improvements in caregiver quality of life and decrease in stress as their chil- dren's quality of life improved. This may be related to the number of parents in our sample being too small to detect such changes or that changes in longer-term (greater than 6 months or 1 year) quality of life not being reflected by short-term assessment.…”

“…12,13 Previous studies of fundoplication in children with NI, GERD, and dysfunctional swallowing reported surgical mortality rates between 1% and 3% and other complications between 4% and 39%, reflecting the medical fragility of these children. 5,14 -18 Some of these studies had longitudinal follow-up and reported long-term data.…”

The Effect of Emotional Intelligence on the Quality of Life of Mothers of Children with Autism

“…Damage to the quality of life in the group of mothers of ASD children has been shown in various studies (1,3,6,7,15,21,22). The quality of life in damaged families with severe disabilities can be adjusted through various factors such as the social support, socioeconomic condition, and the adaptive strategies (23).…”

Qualidade de Vida do Cuidador e Saúde Bucal do Indivíduo com Necessidade Especial

“…O nascimento de uma criança com PC pode originar alterações familiares com diferentes graus de intensidade 4 . A saúde psicológica e física dos cuidadores pode ser fortemente influenciada pelo comportamento da criança e pela demanda de cuidado 5 . O cuidador primário da criança com PC, que normalmente é a mãe, altera sua própria vida em função de melhorar a condição de sua criança 1 .…”