Valuing difference: caregiving by mothers of children with disabilities

Abstract

Mothers who are caregivers of children with disabilities seek to have their children accepted and valued by others in society. This is supported by many reports of studies from different countries that involved mothers of children with disabilities, as well as through publications by disability advocates. In this paper, qualitative research data from interviews with seven mothers of children with disabilities were reanalysed using Bourdieu's theory of practice and van Manen's phenomenological methodology. The results showed that these mothers, who were caregivers of children with disabilities, valued their children despite ongoing challenges, and wanted others to do likewise. This study supports the importance of valuing difference in terms of the insights and understanding gained from those with disabilities and their caregivers. It would be difficult to replicate it exactly; its relevance lies in demonstrating that valuable insights can be gained from extending reflective practice to research that involves re-examining a study from a different theoretical perspective.

Mothers’ experiences of their work as healthcare assistants for their chronic disabled child

“…A satisfying time allocation between different occupations in everyday life, i.e. occupational balance, has been shown to be important for good health [34,35]. The findings of the present study could be interpreted as showing that these mothers do not have occupational balance, and confirms the result of a previous study [36], which showed that the significant care needs associated with having a child with special needs increases the risk for occupational imbalance.…”

Ways of coping and mental burnout of Bedouin mothers compared to Bedouin fathers of children with ASD

“…Ways of coping and mental burnout of Bedouin mothers compared to Bedouin fathers of children with ASD disabled children [18]. Quantitative cohort studies and quasi-experiments in Latin America found that the sensation of tiredness and high demand on the parents caused by taking care of the child with ASD did not change in the time of the follow-up.…”

Emotional Burden in Parents of Children With Trisomy 21. Descriptive Study in a Colombian Population

“…A recent meta-analysis suggested that parenting stress is higher in parents of children with autism spectrum disorders or DS than in parents of typically development children (Hayes & Watson, 2013). Other studies have shown that the stress levels of mothers of children with DS are higher than those of mothers of non-disabled children (Esdaile, 2009;Lenhard, Breitenbach, Ebert, Schindelhauer-Deutscher, & Henn, 2005). Quantitative cohort studies and quasi-experiments in Latin America found that the sensation of tiredness and high demand on the parents caused by taking care of the child with DS did not change in the time of the follow-up.…”