Parental experiences of caring for a child with intellectual disabilities

Abstract

A structured literature search and thematic analysis of six research articles relating to stress and parenting of a child with an intellectual disability in the United Kingdom identified four key themes: impact upon families, service provision and support networks, coping and transition. The findings identified that parenting a child with an intellectual disability is not always a negative role; it is a role that parents find both rewarding and empowering. However, the findings of the literature review primarily related to mothers of children with an intellectual disability with very little focus on the experiences of fathers.

The first year: the support needs of parents caring for a child with an intellectual disability

“…Parenting a child with an intellectual disability can be a rewarding experience for many parents, but they also experience more stress than other parents (Karasavvidis et al . , Willingham‐Storr , Bentley et al . ).…”

“…Information support is consistently identified as a significant factor impacting parents' experiences of caring for their child with an intellectual disability (Willingham‐Storr ). While recommendations suggest a need to provide substantial amounts of information to parents at the time of receiving a diagnosis of disability (Skotko et al .…”

The need to know: The information needs of parents of infants with an intellectual disability—a qualitative study

“…The provision of the three types of information was haphazard. The study highlighted that the provision of foundational information about the infant's condition was largely neglected, an issue that has been consistently raised in past research (Gammons et al., ; Skotko, ; Skotko & Bedia, ; Willingham‐Storr, ). Despite the professional obligation of nurses and midwives to provide health information in an accessible manner (International Council of Nurses ), it would appear much work is still to be done to improve the provision of basic information about an infant's condition at the time of diagnosis.…”

“…Information that helps parents to understand their infant's ongoing needs is also critical to facilitate parents’ advocacy for their infants to access crucial services (Adler et al., , Royal Australasian College of Physicians , p. 3). Despite this, research has shown that parents do not consistently receive enough accurate, relevant information about their infant's condition at the time of diagnosis and when it is provided, information is often outdated and negative (Choi, Lee, & Yoo, ; Gammons, Sooben, & Heslam, ; Goodwin et al., ; Marshall et al., ; Nelson Goff et al., ; Phelps, Pinter, Lollar, Medlen, & Bethell, ; Sheets, Baty, Vázquez, Carey, & Hobson, ; Skotko, ; Skotko & Bedia, ; Willingham‐Storr, ). Also, parents often lack the information they require to access relevant supports and services for their infant (Hussain & Tait, ; Marshall et al., ).…”

Impact of Perceived Stress, Anxiety-Depression and Social Support on Coping Strategies of Parents Having A Child With Gilles de la Tourette Syndrome

“…It also appears that GTS can have a significant effect on relatives of the patients, especially parents, as raising a child with a developmental disorder is considered a stressful experience (Evans, Wittkowski, Butler, Hedderly, & Bunton, 2015;Lee, Chen, Wang, & Chen, 2007). Several studies have been conducted on parental stress as well as adjustment and coping strategies in families having a child with special needs such as a chronic illness or psychiatric disorders (Crnic & Greenberg, 1990;Hanson & Hanline, 1990;Willingham-Storr, 2014). However, very few studies have been conducted on the psychological impact of having a child with GTS.…”