Caregiving burden of families looking after persons with intellectual disability and behavioural or psychiatric problems

Abstract

š AbstractBackground During the last decade, there has been a growing interest in outpatient support services for persons with intellectual disability (ID) and psychiatric and/or behavioural problems and their families. In this study, we explore the family burden that is associated with children or adults with ID and behavioural or psychiatric problems living at home. Method The research group consisted of  clients of In Casa, a project of outpatient treatment. Their average age is  .  years and their average IQ  .  . The Reiss Screen for Maladaptive Behaviour (adults) or Reiss Scales for Children's Dual Diagnosis (children) and the Nijmegen Family Situation Questionnaire have been administered. Results About  % of the children and  % of the adults living at home and referred to In Casa have severe psychiatric or behavioural problems as measured by the Reiss scales. The dual diagnosis has a more negative impact on the family situation than the condition of ID only.

Quality of Life in Mothers of Children with Cerebral Palsy

“…Th e quality of life connected with health is a subjective health condition or experience of health and refers to the impact of disease, damage, disorder, or in short of the health condition on the quality of life in order to be diff erentiated from other aspects of the quality of life. It has a signifi cant clinical interest in the case of family members involved in the treatment, especially in cases when patients are children 2 because diffi culties in the child's development require increased intensity of care, which may become a burden for parents and infl uence their physical and mental health [3][4][5][6][7][8] .…”

Family impact in intellectual disability, severe mental health disorders and mental health disorders in ID. A comparison

“…It has been stated (Maes, Broekman, Došen, & Nauts, 2003) that caregiving to people with mental health disorders and intellectual disabilities has a higher impact on families than the sole condition of intellectual disabilities. The underlying hypothesis of challenging behaviours accounting for most of family burden has already been stated (Emerson et al, 2001).…”

Family burden related to clinical and functional variables of people with intellectual disability with and without a mental disorder

“…However, fewer studies have looked at the families of adults with ID, even though the burden on families providing informal care for adults increased with the rise of psychiatric community services (Mandelbrote & Folkard, 1961). Some researchers have pointed out that less attention has been paid to burden in the informal care of people with ID-MD (Maes, Broekman, Dosen, & Nauts, 2003;Wodehouse & McGill, 2009).…”

“…Caregivers of people with ID and ID-MD may perceive their personal situation as stressful and consider that they lack effective strategies or sufficient resources to cope (Lazarus & Folkman, 1984;Maes et al, 2003). Personal, family, and context factors are the modulators of parental stress in the degree of adaptation to the family situation (Kim, Greenberg, Seltzer, & Krauss, 2003;Maes et al, 2003;Orsmond, Seltzer, Krauss, & Hong, 2003), with older caregivers experiencing less family burden (Chou, Lee, Lin, Krö ger, & Chang, 2009).…”

“…Personal, family, and context factors are the modulators of parental stress in the degree of adaptation to the family situation (Kim, Greenberg, Seltzer, & Krauss, 2003;Maes et al, 2003;Orsmond, Seltzer, Krauss, & Hong, 2003), with older caregivers experiencing less family burden (Chou, Lee, Lin, Krö ger, & Chang, 2009). People with ID plus mental and behavioral disorders generate higher levels of demand, more caring hours and a need for assistance with personal care (Greenberg, Seltzer, & Greenley, 1993;Heller, Miller, and Factor 1997;Pinquart & Sö rensen, 2006;Winefield & Harvey, 1993) …”