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

Abstract

Few studies have been found that to assess the factors that explain higher levels of family burden in adults with intellectual disability (ID) and intellectual disability and mental disorders (ID–MD). The aims of this study were to assess family burden in people with ID and ID–MD and to determine which sociodemographic, clinical and functional disability variables account for family burden. The sample is composed of pairs of 203 participants with disability and their caregivers, of which 33.5% are caregivers of people with ID and 66.5% of ID–MD. Assessments were performed using scales of clinical and functional disability as the following instruments: Weschler Adult Intelligence Scale-III (WAIS-III), Inventory for Client and Agency Planning (ICAP), Psychiatric Assessment Schedule for Adults with Development Disability (PAS-ADD checklist), Disability Assessment Schedule of the World Health Organization (WHO-DAS-II) and family burden (Subjective and Objective Family Burden Inventory – SOFBI/ECFOS-II). People with ID–MD presented higher levels of functional disability than those with ID only. Higher levels of family burden were related to higher functional disability in all the areas (p < 0.006–0.001), lower intelligence quotient (p < 0.001), diagnosis of ID–MD (p < 0.001) and presence of organic, affective, psychotic and behavioral disorders (p < 0.001). Stepwise multiple regression showed that behavioral problems, affective and psychotic disorder, disability in participation in society, disability in personal care and presence of ID–MD explained more than 61% of the variance in family burden. An integrated approach using effective multidimensional interventions is essential for both people with ID and ID–MD and their caregivers in order to reduce family burden.

Introduction

Conservative estimates suggest a worldwide prevalence of intellectual disability (ID) of 0.9–1.7% (Maulick, Mascarenhas, Mathers, Dua, & Saxena, 2011) although higher rates are reported for low- and middle-income countries (Durkin, 2002). The burden and costs associated with intellectual disability, which comprises a broad array of different health conditions, has been widely recognized to be high, yet there is a large division between the availability of services and the health needs of affected individuals (Salvador-Carulla & Saxena, 2009). The service gap is particularly great in those suffering ID and co-occurring mental disorders (ID–MD) (Cooper, Smiley, Morrison, Williamson, & Allan, 2007a). The point prevalence of associated psychiatric disorders in ID is about 40% (including behavior problems) (Bailey, 2007, Cooper et al., 2007a, Deb et al., 2001) and an annual incidence of 8% has been reported (Smiley et al., 2007). Although people with ID can suffer from the whole spectrum of psychiatric disorders, some are notably more common than in the general population. Among the most commonly associated diagnoses are non-affective psychosis (Salvador-Carulla et al., 2000, Cooper et al., 2007b) and bipolar disorder (Cooper, Smiley, Morrison, Williamson, & Allan, 2007c). ID–MD is also frequently linked to problem behaviors, which have prevalence around 20% in this population (Deb et al., 2001, Holden and Gitlesen, 2004, Lowe et al., 2007).

The concept of family burden was imported to the study of ID from the mental health field. Studies assessing burden in families with children with autistic, physical and intellectual disability have found that heavier costs and other burdens develop in the course of raising such children than in raising children without special difficulties (Xion et al., 2010). 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 et al., 2003, Wodehouse and McGill, 2009).

Family burden is a complex construct, which includes very different domains ranging from family routines to number of caring hours, social support networks and out-of-pocket expenses. Therefore, a holistic view should include the understanding of family burden in biopsychosocial framework (World Health Organization [WHO], 2001). One study of unpaid caregivers of people with learning disabilities referring to intellectual disabilities in the United Kingdom found that 75% of caregivers of an adult with ID had been caring for more than 20 years, 26% reported not being in paid employment due to their responsibilities, and 48% spent 100 or more hours a week caring for that person (Emerson et al., 2010). However, 90% of those caregivers felt they were or were usually involved as much as they wanted to be in decisions about the care and treatment of the person they cared for. Care giving in mental disorder may also generate worry, shame and guilt. Researchers have reported that families can suffer from the stigma associated with the disorders of the persons they care for (Schene, 1990, Szmukler et al., 1996, Tessler and Gamache, 1995).

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 and 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 et al., 2003, Maes et al., 2003, Orsmond et al., 2003), with older caregivers experiencing less family burden (Chou, Lee, Lin, Kröger, & 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 et al., 1993, Heller et al., 1997, Pinquart and Sörensen, 2006, Winefield and Harvey, 1993). Our group recently evaluated family burden in three groups of support service users (ID, ID–MD and schizophrenia), demonstrating the highest level of burden in ID–MD users (Martorell, Gutiérrez-Recacha, Irazábal, Marsà, & García, 2011).

Functional disability is usually defined as the difficulty or inability to independently perform basic activities of daily living or other tasks essential for independent living without assistance. People with ID presented higher levels of functional disability. Carr (2008) shows that people with ID had greater limitations in terms of autonomy; Määttä, Tervo-Määttä, Taanila, Kaski, and Iivanainen (2006) describe greater problems in verbal capacity and Bertoli et al. (2011) found that, in people with ID, problems with daily activities increase over time. Moreover, a number of problems arise in daily activities in people with MD, especially in those with severe mental problems (Viertiö et al., in press, Kurzban et al., 2010). So, the functional disability in people with ID–MD is expected to be greater.

According to the literature revision only, Heller and Factor (1991) have related social functioning of adults with ID and ID–MD to family burden, showing that worse social functioning of adults with ID–MD is related to higher levels of family burden. Fewer studies have related family burden to clinical and functional disability in adults ID and ID–MD.

Following on from the previous studies, we expected that family burden would be greater in ID–MD than in ID as a result of the additional factors of mental disorder and associated behavioral disorders and higher functional disability in the service user. Since there has been little study in this area and data are somewhat hazy, our aim was to provide additional information on the subject. In one single study, we have included the most important aspects from the limited literature available (sociodemographic and clinical factors and functional disability) that influence family burden. Therefore, the aims of the present study were to assess family burden in people with ID and ID–MD and to determine which sociodemographic, clinical and functional disability variables explain higher levels of family burden.