Quality of Life in Adolescents with a Disability and Their Parents: The Mediating Role of Social Support and Resilience

Abstract

The aim of this study was to test whether the effect of the pile-up of demands associated with a disability on quality of One of the core notions in the systemic approach is that families form an interactive and interdependent system where what happens to one family member will also affect all the other members of the system (Goldenberg & Goldenberg, 2003;Turnbull & Turnbull, 2001). The disability of a child is such an event that will affect the whole family. Compared to families with typically developing children, a child with a disability poses specific challenges. A multitude of adverse effects of a disability on the family have been found, including higher levels of stress, lower well-being, more negative feelings on parenting, less marital satisfaction, a financial and a caretaker burden (Baker, Blacher, & Olsson, 2005;Blacher & McIntyre, 2006;Hatton & Emerson, 2003;Hunfeld et al., 2001;Maes, Broekman, Dosen, & Nauts, 2003;McIntyre, Blacher, & Baker, 2002;Wilkinson et al., 2001).However, research in families with a child with a disability is inconclusive regarding the impact of the disability on the family. Other studies in families of children with a disability recognize the positive effects these children can have on their family members, including better parent-child interactions, more family cohesion and a stronger life purpose Quality of Life 4 (Flaherty & Glidden, 2000;Glidden, Bamberger, Turek, & Hill, 2010;Green, 2007; Hastings & Taunt, 2002;Kearney & Griffin, 2001;Taanila, Jarvelin, & Kokkonen, 1999). Thus some families seem to do well despite the extra stressor of the disability of their child, while others struggle and succumb.There is a large body of literature suggesting several individual and family characteristics that are positively related to the family's adaptation to a child with a disability. Social support, resilience, good family cohesion, effective coping skills and positive cognitive appraisals might all influence the potential negative impact of the disability on the family (Lavee, Hamilton, & Patterson, 1985;Saloviita, Itälinna, & Leinonen, 2003;Taanila et al., 1999;Tak & McCubbin, 2002).It has become apparent that individual and family outcomes due to the impact of a pile-up of demands associated with living with a disability are the result of multiple factors interacting with each other. Therefore a multivariate model incorporating both psychological and social variables that could intervene between the stressor and the outcome is needed. The double ABCX model of McCubbin and Patterson (1983) is one of the most influential theoretical frameworks in this field. The model provides a theoretical basis for examining the effect of a stressor and pile-up of demands (factor aA) on the family adaptation (factor XX) through the Quality of Life 5 mediation of the existing and expanding family recourses (factor bB), the meaning the family assigns to their situation (factor cC), and the coping strategies employed by the family (factor BC) (Jacques, 2006;McCubbin & Patterson, 1983), w...

“When everything changes:” Parent perspectives on the challenges of accessing care for a child with a disability

“…Families with a child with a disability often experience a strong bond and parentechild interactions. 12 Parents are often responsible for coordinating the care for a child living with a disability. 13 Social resources can help parents cope with the many challenges associated with caring for a child with a disability.…”

“…14 Adverse effects associated with caring for a child with a disability may include: high levels of stress, negative feelings toward parenting, less satisfaction with their marriage, financial and physical burden. 12,15 Without adequate support, families with a child with a disability may not be able to provide optimal support.…”

Intergenerational Influence and Quality of Life: A Study Within Families with a Child with a Disability

“…Quality of life is a universal, multidimensional concept (Cummins, 1997;Schalock et al, 2002;Schalock & Felce, 2004) including a person's material well-being, health, productivity, intimacy, safety, community, and emotional well-being. In line with previous research within families with a disability (see Migerode, Buysse, Maes, & Brondeel, 2012c), family members' subjective reports about their satisfaction with each of these life-domains will be used as an index of their subjective quality of life.…”

“…Alpha coefficients in this study ranged from to .84 to .90. The ComQol has been previously used in other studies with a similar sample of children with a disability (Migerode et al, 2012c).…”

Relations of the Acculturation, Personality, Coping Styles and Resilience of Qiang Nationality Following 2008 Chinese Earthquake

“…A vast numbers of studies has concluded that resilience is a protective factor against the development of psychiatric disorders, such as PTSD and depression [1]. Resilience has been shown to contribute to disaster victims' recovery, and has been generally positively related to people's mental health and quality of life [2].…”