Family Control: The Views of Families Who have a Child with an Intellectual Disability

Abstract

This paper, reporting on part of a wider study, explores the views held by 68 families, who have a child with a disability, of their perceptions of lifestyle control or empowerment. In particular, the paper seeks to examine whether these families perceive their interactions with service providers to be consistent with family‐empowerment principles. Individual open‐ended interviews were conducted with these family members, yielding information on their perceptions of their control over their family lives, and on their views as to how their interactions with service providers might be conducted in such a way as to recognize and enhance such control. The implications for professionals working with families in a manner that recognizes family members as truly equal partners and that promotes and enhances genuine family empowerment are discussed.

The transition into adulthood for children with a severe intellectual disability: parents’ views

“…This included services being unsupportive towards parents; excluding the child and/or parent; and a general lack of negotiation between parents and professionals. Similar barriers have been identified in previous research (Knox, 2000;Swain and Walker, 2003) and are likely to increase parents' worries about their child's transition process. Swain and Walker (2003) highlight inherent power imbalances between parents of a child with a disability and professionals.…”

“…Existing intellectual disabilities literature focusing upon parents' views of their child's transition into adulthood have explored perceptions of their child's vulnerability to risk (e.g., Almack, Clegg and Murphy, 2008;Heslop, Mallet, Simons and Ward, 2002) and the parent-professional relationship (e.g., Clegg, Sheard, Cahill and Osbeck, 2001;Knox, 2000). Additionally, a recent systematic review of 17 empirical studies identified that factors such as child behavioural difficulties (e.g., challenging behaviour), unhelpful parental coping strategies (including avoidance and self-blame) and poor family cohesion were associated with parental stress when caring for a child with an intellectual disability (Biswas et al, 2014).…”

First session solution‐focused brief therapy with families who have a child with severe intellectual disabilities: mothers' experiences and views

“…Parents caring for a child with ID Parents who have a child with ID report that caring can be a positive experience, gratifying and personally enhancing (Grant et al, 1998;Hastings and Taunt, 2002;. They want this to be acknowledged and suggest that a vision of a promising future helps to create a sense of control over family life (Knox et al, 2000). They also point to negative experiences, when services have failed to acknowledge grief or have lacked sensitivity to demands on the family and their stage in the life cycle (Bruce and Schultz, 2002;Grant and Ramcharan, 2001;Grant et al, 2003;Shearn and Todd, 1997).…”

“…services and interventions that share decision-making with them, and respect their views and expertise (e.g. Cunningham and Davis, 1985;Knox et al, 2000). They also value listening, empathy, directness and information (Pain, 1999;Sebba, 1989;Witts and Gibson, 1997).…”

Video Observations of Dyadic Interaction: Behaviour style of Presymbolic Children

“…These results show that the caregivers know what to strive for in the interaction and they know their children's limitations and characteristics. It is important that professionals see the caregivers as experts on their children and that they are included in intervention planning (Knox, Parmenter, Atkinson & Yazbeck 2000, Olsson & Granlund 2003. Furthermore, as professionals feel most discomfort in consultation situations about children with severe disabilities (Wesley, Buysse & Keyes 2000) it is important to find ways of intervening that are facilitative.…”