Quality of life: a survey of parents of children/adults with an intellectual disability who are availing of respite care

Abstract

Accessible summary This article describes the findings of a small‐scale survey investigating the quality of life of parents of children and adults with an intellectual disability who are availing respite care with a response rate of 38% (n = 49). The findings of the study which was conducted in 2008 on parents’ experience of respite care in an Irish setting indicated that: Demand exceeds supply and many parents face a lengthy wait gaining access to respite care Respite care was not necessarily associated with parental desire for an improvement in quality of life The majority of parents reported that their quality of life was either ‘good’ or ‘excellent’ Further studies need to be conducted to establish what services are deemed most valuable to parents Summary Two‐thirds of the people registered on the Irish National Intellectual Disability Database (NIDD) reside at home with family members frequently supporting them (Kelly et al., National Intellectual Disability Database Committee Annual Report 2006, Health Research, 2007). Use of respite care services by parents with a child/adult with an intellectual disability (ID) in Ireland is growing in the context of social policy initiatives for greater social inclusion of people with disabilities. Irish parents who care for their child/adult with an ID at home are not asking for the care of their child/adult to be taken away from them, but to assist them in this role and to help them to meet the demands of personal, family, social and work life, they need to be supported with reliable, flexible and responsive services (Redmond & Richardson, J Appl Res Intellect Disabil, 2003; 16: 205–218). Parents often have to negotiate complex barriers to access support services such as respite, health or social care (Sloper, Child Care Health Dev, 1999; 25: 85–99). Chadwick et al, (Child Adolesc Ment Health 2002; 7: 66–72) suggest that respite care was primarily regarded as a service that was provided to relieve parental burdens. This article draws on a recent study that investigated the quality of life of parents of children/adults who have an intellectual disability and who are availing of respite care. The findings suggest that parents are experiencing ‘good’ to ‘excellent’ quality of life and that demand exceeds supply. More work needs to be carried out to establish what services are deemed most valuable to parents and to show how their needs can be met to the best of the Health Service Providers ability.

The impact of caring for adults with intellectual disability on the quality of life of parents

“…The finding that caring had a negative effect on parents' relationships with their spouses is consistent with previous research (e.g. Caples & Sweeney 2010). Caples & Sweeney (2010) reported that parents of children and adults with ID often had to socialise separately because of caring demands.…”

“…Increased opportunities for participation in leisure activities that resulted from caring for an adult with ID have also been reported by parents of children and adults with ID (e.g. Shearn & Todd 1997; Caples & Sweeney 2010). The restrictions in leisure activities that detracted from QOL reported in the current study (e.g.…”

“…Caples & Sweeney 2010). Caples & Sweeney (2010) reported that parents of children and adults with ID often had to socialise separately because of caring demands. However, in contrast to previous research (e.g.…”

“…2000). Family QOL, that is, the combined QOL of individual family members (Brown & Brown 2003), has been reported as good and excellent by parents of adults with ID (Caples & Sweeney 2010). Minnes et al .…”

Family Caregiver Uplift and Burden: Associations With Aggressive Behavior in Adults With Intellectual Disability

“…Sixty-five percent of participants in their study reported perceived benefits or positive outcomes such as "personal growth/enhanced personal resources," "enhanced social network," and a "sense of fulfilment or pride" (p. 44). Recent research suggests that the majority of parents of children and adults with ID experience high levels of satisfaction and quality of life (Caples & Sweeney, 2010). Previously, it has been reported that caregivers of adults with ID experience rewards and gratifications as part of the caregiving role (Grant, Ramcharan, McGrath, Nolan, & Keady, 1998).…”