how do mothers and fathers who have a child with a disability describe their adaptation/ transformation process?

Abstract

This qualitative study explored the adaptation/transformation process in mothers and fathers at the individual, parental, marital and extrafamilial levels, and the similarities and differences in their experience of living with a child with cerebral palsy. Interviews were conducted with 13 mothers and 13 fathers of children with cerebral palsy. The results show that mothers and fathers are more likely to view the situation differently than similarly. For both parents, the situation offers the potential for transformation. Complementarity between mothers and fathers is an important factor in each of the adaptation or transformation subsystems. Both parents embark on a journey that changes their beliefs about difference, apply their new knowledge to every aspect of their life, and endeavour to normalize their situation.

For fathers raising children with autism, do coping strategies mediate or moderate the relationship between parenting stress and quality of life?

“…In the case of having a child with autism, the father's roles, reactions, and experiences were found pivotal for the child's, mother's, and whole family's health and well-being (Donaldson et al, 2011;Hastings et al, 2005). Fathers who are able to develop effective coping skills tend to report more positive perspective and value from their special parenting experiences (Lewis et al, 2010;Pelchat et al, 2009). This study went beyond the traditional perspective of describing paternal coping when raising a child with autism to investigating the role of such coping responses in the relationship between fathers' parenting stress and QoL.…”

Optimism and sense of coherence in mothers and fathers of children with cerebral palsy participating in an intensified habilitation programme

“…Mothers may be more open to such intensified habilitation programs (Pelchat et al 2009), or the PIH intervention may be more suitable for mothers than fathers , Lerdal et al 2013). …”

“…Having a child with a disability can be described as a fundamental transformation and adaptation process for parents, and implications of the child's disability may influence every sphere of family life (Pelchat, Levert, and Bourgeois-Guérin 2009). Cerebral palsy (CP) is the most common neurological disability in childhood with a prevalence of 2.1 per 1000 live births (Andersen et al 2008).…”

Ethics in neurodevelopmental disability

“…Therefore parents, adolescents, and healthcare providers will have to deliberate about how attitudes towards disability should be factored into decisions to seek CAM therapies, and about how to balance a respect for autonomy with other competing values for those seeking CAM therapies. Further, "parents emphasize the important benefits that they derive from raising [their child] and the enhancements they make to family life" (Carnevale et al, 2008) Resources available to parents combined with parental perceptions of the severity of the disability determine stress and ability to adapt more than the actual severity of the disability (Pelchat et al, 2009) Parents' beliefs about difference change when they have a child with a disability and resist stigmatization, allowing them to manage effectively and positively. Sanderson and colleagues' (2006) model of the "therapeutic footprint" describes conventional medicine and CAM intervention as occupying different but overlapping places on scales of levels of risk and amount of available supportive evidence.…”