Published for the British Institute of Learning Disabilities
Journal of Applied Research in Intellectual Disabilities 2016, 29, 356–365
Informal Support and Burden among Parents of Adults with Intellectual and/or Developmental Disabilities Suzanne Robinson*,†, Jonathan A. Weiss*, Yona Lunsky† and Helene Ouellette-Kuntz‡ *York University, Toronto, ON, Canada; †Centre for Addiction and Mental Health, Toronto, ON, Canada; ‡Queen’s University, Kingston, ON, Canada
Accepted for publication 24 February 2015
Background Parents often play a lifelong role in supporting their sons and daughters with intellectual and/or developmental disabilities (IDD). There is a need to better understand parent resources, particularly when the individual with IDD has behaviour problems, as the latter has consistently been linked to parental burden. Methods The current study aimed to investigate the relationship between the behaviour support needs of 212 adults with IDD and parental burden, and whether perceived helpfulness of informal supports moderated this relationship. The helpfulness of individual sources of informal support was also explored.
Introduction Parenting a child with an intellectual and/or developmental disability (IDD) can be a lifelong responsibility, especially within the context of limited services for adults with intellectual and/or developmental disability (Minnes & Woodford 2005). While many parents adapt well to caring for their child into adulthood, many parents experience negative outcomes (Hastings et al. 2002; Minnes & Woodford 2005). A recent US report surveyed 5000 family members of individuals with IDD and found the vast majority of unpaid caregivers report feeling tired and stressed some or most of the time (Anderson et al. 2011). Nearly half of family members said they have more caregiving responsibilities than they can manage. The additional time and care involved in supporting a son or daughter with IDD may lead to parents feeling considerable burden, defined as ‘the perception of psychological © 2015 John Wiley & Sons Ltd
Results Informal support was negatively related to burden, although it did not act as a moderator. Individual sources varied in terms of how they were related to burden, but none acted as moderators. Conclusions Although informal social support appears to be important to parents and may help alleviate burden, it does not appear to act as a moderator as anticipated. Keywords: developmental disabilities, disabilities, parental burden, social support
intellectual
distress, anxiety, depression, demoralization, and generalized loss of personal freedom attributed directly to caregiving’ (Lawton 1991, p 182). Experiences of burden are more prevalent among parents of individuals with IDD compared to parents of typically developing individuals (Rodrigue et al. 1990; Maes et al. 2003; AlKrenawa et al. 2011; Manor-Binyamini 2011). Parental burden is associated with a number of parent and family difficulties. For caregivers of individuals with IDD, burden is related to depression (Magana et al. 2002; Kim et al. 2003), family problems (Magana et al. 2002), marital discord (Essex & Hong 2005), psychological distress (Magana et al. 2002), lower quality of mother– child relationships (Kim et al. 2003; Pruchno 2003), caregiving satisfaction (Pruchno 2003) and increased parent health service use (Maes et al. 2003). Numerous studies have set out to elucidate the characteristics of the individual with IDD that are associated with parental burden. Symptom severity or 10.1111/jar.12184
Journal of Applied Research in Intellectual Disabilities
level of disability is linked to higher levels of strain and burden (Haveman et al. 1997; Stuart & McGrew 2009; Lin 2010; Chou et al. 2011; Irazabal et al. 2012). This is also true when the individual with IDD has health complications (Haveman et al. 1997; Heller et al. 1997a; Kring et al. 2010) or a mental health problem (Maes et al. 2003; Unwin & Deb 2011; Irazabal et al. 2012). Researchers have found that a parent’s higher education level (Haveman et al. 1997; Green, 2007; AlKrenawa et al. 2011; Manor-Binyamini 2011), higher income (Essex & Hong 2005; McManus et al. 2011), physical health (Magana et al. 2002; Tsai & Wang 2009; Chou et al. 2011) and effective coping style (Kim et al. 2003; Mak & Ho 2007; Stuart & McGrew 2009) are associated with less subjective burden. Additionally, caregivers who have more children living at home (Manor-Binyamini 2011) or maintain work outside the home (Green, 2007) are more likely to report feelings of burden than those not in these situations. By better understanding the factors that are related to feelings of burden, the present authors can adjust services and supports to better suit the needs of parents. Behaviour problems, aggression and high levels of behavioural support needs are associated with to burden among parents of individuals with IDD (Heller et al. 1997a,b; Magana et al. 2002; Essex & Hong 2005; Kring et al. 2010; Lin 2010). Investigating how this behaviour impacts parent well-being is particularly important as behaviour problems among adults with intellectual and/or developmental disability are common, with prevalence as high as 51.8% (Crocker et al. 2006). These behaviour problems can isolate a family, limit access to services, place additional burden on the caregivers and strain the parent–child relationship (Unwin & Deb 2011). A number of theoretical models applied to parents of individuals with IDD propose that the relationship between stressors, such as behaviour problems, and manifestations of stress, such as burden, is mitigated by the available resources. It is important to explore potential resources that may lessen the impact of stressors and help sustain parents. Pearlin et al.’s (1990) Stress Process model of caregiving conceptualizes social support as an integral external resource and buffer. Social support is seen as the helpfulness and availability of physical, instrumental assistance, information or advice sharing, and emotional and psychological support (Dunst, Trivette & Cross, 1986). Social support is commonly conceptualized as a single broad concept, or as informal (e.g. spouse, extended family, © 2015 John Wiley & Sons Ltd, 29, 356–365
357
neighbours) and formal (e.g. respite services, doctors) support (Dunst et al. 1986). As an overall concept, social support appears to have positive impacts on parents and families. For parents of individuals with IDD, helpful social support is linked to lower levels of stress (Dyson 1997; Smith et al. 2001; Feldman et al. 2002; Hassal et al. 2005), distress (Gallagher et al. 2008) and spousal problems (Dunn et al. 2001) as well as higher levels of self-efficacy (Kersh et al. 2006) and caregiving appraisals (Chou et al. 2011). A handful of studies have specifically looked at how social support may ameliorate feelings of burden for parents of individuals with IDD. Greenberg et al. (1997) focused on older parents caring for adults with IDD in the United States and found no direct effect of social support (as measured by network size and structure) on burden. Similarly, Chou et al. (2011) interviewed 350 older mothers of adults with IDD in Taiwan and did not find that informal or formal social support predicted subjective or objective burden. However, Seltzer & Krauss (1989) reported that informal but not formal social support was related to parental burden for older mothers, and Heller & Factor (1993) found both informal social support and unmet formal service needs predicted burden among ageing caregivers. How formal and informal supports relate to burden varies by study to some extent, but none of these studies considered individual sources of support beyond a dichotomy of informal and formal. When social support is dichotomized, informal supports appear to be more strongly linked to parental well-being than formal supports for parents of individuals with IDD (Seltzer & Krauss 1989; Heller & Factor 1993; White & Hastings 2004). Although parents value formal supports and often use them in the provision of care for individuals with IDD (Lefley 1997; Siklos & Kerns 2006), dissatisfaction with formal services, or long wait lists for increasingly limited supports, may intensify stress and burden for parents. Within the realm of informal supports, it is likely that different sources of informal support provide unique benefits. There is value in examining dimensions of social support individually as they may provide differing benefits when parents must cope with behaviour problems. Although it is argued that support can act as a buffer (e.g. Pearlin et al. 1990), studies of parents of adults IDD have looked only at direct associations and not tested the moderator hypothesis directly. If indeed, social support buffers parental burden, then parents with stressors should experience less burden in the presence of social support.
358 Journal of Applied Research in Intellectual Disabilities
This study expands on previous research on the relationship between behaviour problems and burden by exploring whether informal support moderates this relationship among parents of adults with IDD. Informal support was examined as a multidimensional concept, made up of different sources of support with potentially unique moderating effects. Beyond overall informal support, the specific effects of spouse/partner support, support from one’s own children and one’s parents were also explored. These are three common sources of informal support available to families, although limited research has focused on their unique benefits.
Methods Procedure and sample This study was reviewed and approved by the Queen’s University Health Sciences and Centre for Addiction and Mental Health Research Ethics Boards. When parents approached their local service access centres to apply for services for their son or daughter, agency staff gave parents an information sheet about the study. In some cases, staff mailed or emailed the information sheet to parents or provided the information by phone. If parents were interested in learning more about the study, they provided their contact information to the research team by mail or email. Once the research team offered the parent additional information on the study and the parent verbally agreed to participate, the consent forms and initial questionnaires were mailed. When signed consent forms had been returned to the research team, 30-min phone interviews with the parents were scheduled. The sample consisted of 212 parents seeking adult services for their son or daughter with IDD in Ontario, Canada. To be eligible for this study, the adolescent or adult son/daughter with IDD had to be 16 years of age or older and currently living at home. All individuals were verified as having IDD through the service access intake process. The individuals with IDD were mostly male (64.2%) and ranged in age from 16 to 53 years (M = 23.30, SD = 7.52 years). Approximately one-third (32.5%) had a diagnosis of autism spectrum disorder (ASD) and a quarter had a mobility impairment (25.1%). More than one-third (34.4%) had a concurrent mental health condition. The parents ranged in age from 38 to 91 years (M = 53.50, SD = 8.46 years). The majority of participating parents were mothers (85.4%) married to their child’s
other parent (65.4%), with the remainder reportedly being separated/divorced (24.8%), never married (4.9%) or widowed (4.9%). Parents reported a wide range of incomes, with 21.6% reporting an annual household income
Journal of Applied Research in Intellectual Disabilities 2016, 29, 356–365
Informal Support and Burden among Parents of Adults with Intellectual and/or Developmental Disabilities Suzanne Robinson*,†, Jonathan A. Weiss*, Yona Lunsky† and Helene Ouellette-Kuntz‡ *York University, Toronto, ON, Canada; †Centre for Addiction and Mental Health, Toronto, ON, Canada; ‡Queen’s University, Kingston, ON, Canada
Accepted for publication 24 February 2015
Background Parents often play a lifelong role in supporting their sons and daughters with intellectual and/or developmental disabilities (IDD). There is a need to better understand parent resources, particularly when the individual with IDD has behaviour problems, as the latter has consistently been linked to parental burden. Methods The current study aimed to investigate the relationship between the behaviour support needs of 212 adults with IDD and parental burden, and whether perceived helpfulness of informal supports moderated this relationship. The helpfulness of individual sources of informal support was also explored.
Introduction Parenting a child with an intellectual and/or developmental disability (IDD) can be a lifelong responsibility, especially within the context of limited services for adults with intellectual and/or developmental disability (Minnes & Woodford 2005). While many parents adapt well to caring for their child into adulthood, many parents experience negative outcomes (Hastings et al. 2002; Minnes & Woodford 2005). A recent US report surveyed 5000 family members of individuals with IDD and found the vast majority of unpaid caregivers report feeling tired and stressed some or most of the time (Anderson et al. 2011). Nearly half of family members said they have more caregiving responsibilities than they can manage. The additional time and care involved in supporting a son or daughter with IDD may lead to parents feeling considerable burden, defined as ‘the perception of psychological © 2015 John Wiley & Sons Ltd
Results Informal support was negatively related to burden, although it did not act as a moderator. Individual sources varied in terms of how they were related to burden, but none acted as moderators. Conclusions Although informal social support appears to be important to parents and may help alleviate burden, it does not appear to act as a moderator as anticipated. Keywords: developmental disabilities, disabilities, parental burden, social support
intellectual
distress, anxiety, depression, demoralization, and generalized loss of personal freedom attributed directly to caregiving’ (Lawton 1991, p 182). Experiences of burden are more prevalent among parents of individuals with IDD compared to parents of typically developing individuals (Rodrigue et al. 1990; Maes et al. 2003; AlKrenawa et al. 2011; Manor-Binyamini 2011). Parental burden is associated with a number of parent and family difficulties. For caregivers of individuals with IDD, burden is related to depression (Magana et al. 2002; Kim et al. 2003), family problems (Magana et al. 2002), marital discord (Essex & Hong 2005), psychological distress (Magana et al. 2002), lower quality of mother– child relationships (Kim et al. 2003; Pruchno 2003), caregiving satisfaction (Pruchno 2003) and increased parent health service use (Maes et al. 2003). Numerous studies have set out to elucidate the characteristics of the individual with IDD that are associated with parental burden. Symptom severity or 10.1111/jar.12184
Journal of Applied Research in Intellectual Disabilities
level of disability is linked to higher levels of strain and burden (Haveman et al. 1997; Stuart & McGrew 2009; Lin 2010; Chou et al. 2011; Irazabal et al. 2012). This is also true when the individual with IDD has health complications (Haveman et al. 1997; Heller et al. 1997a; Kring et al. 2010) or a mental health problem (Maes et al. 2003; Unwin & Deb 2011; Irazabal et al. 2012). Researchers have found that a parent’s higher education level (Haveman et al. 1997; Green, 2007; AlKrenawa et al. 2011; Manor-Binyamini 2011), higher income (Essex & Hong 2005; McManus et al. 2011), physical health (Magana et al. 2002; Tsai & Wang 2009; Chou et al. 2011) and effective coping style (Kim et al. 2003; Mak & Ho 2007; Stuart & McGrew 2009) are associated with less subjective burden. Additionally, caregivers who have more children living at home (Manor-Binyamini 2011) or maintain work outside the home (Green, 2007) are more likely to report feelings of burden than those not in these situations. By better understanding the factors that are related to feelings of burden, the present authors can adjust services and supports to better suit the needs of parents. Behaviour problems, aggression and high levels of behavioural support needs are associated with to burden among parents of individuals with IDD (Heller et al. 1997a,b; Magana et al. 2002; Essex & Hong 2005; Kring et al. 2010; Lin 2010). Investigating how this behaviour impacts parent well-being is particularly important as behaviour problems among adults with intellectual and/or developmental disability are common, with prevalence as high as 51.8% (Crocker et al. 2006). These behaviour problems can isolate a family, limit access to services, place additional burden on the caregivers and strain the parent–child relationship (Unwin & Deb 2011). A number of theoretical models applied to parents of individuals with IDD propose that the relationship between stressors, such as behaviour problems, and manifestations of stress, such as burden, is mitigated by the available resources. It is important to explore potential resources that may lessen the impact of stressors and help sustain parents. Pearlin et al.’s (1990) Stress Process model of caregiving conceptualizes social support as an integral external resource and buffer. Social support is seen as the helpfulness and availability of physical, instrumental assistance, information or advice sharing, and emotional and psychological support (Dunst, Trivette & Cross, 1986). Social support is commonly conceptualized as a single broad concept, or as informal (e.g. spouse, extended family, © 2015 John Wiley & Sons Ltd, 29, 356–365
357
neighbours) and formal (e.g. respite services, doctors) support (Dunst et al. 1986). As an overall concept, social support appears to have positive impacts on parents and families. For parents of individuals with IDD, helpful social support is linked to lower levels of stress (Dyson 1997; Smith et al. 2001; Feldman et al. 2002; Hassal et al. 2005), distress (Gallagher et al. 2008) and spousal problems (Dunn et al. 2001) as well as higher levels of self-efficacy (Kersh et al. 2006) and caregiving appraisals (Chou et al. 2011). A handful of studies have specifically looked at how social support may ameliorate feelings of burden for parents of individuals with IDD. Greenberg et al. (1997) focused on older parents caring for adults with IDD in the United States and found no direct effect of social support (as measured by network size and structure) on burden. Similarly, Chou et al. (2011) interviewed 350 older mothers of adults with IDD in Taiwan and did not find that informal or formal social support predicted subjective or objective burden. However, Seltzer & Krauss (1989) reported that informal but not formal social support was related to parental burden for older mothers, and Heller & Factor (1993) found both informal social support and unmet formal service needs predicted burden among ageing caregivers. How formal and informal supports relate to burden varies by study to some extent, but none of these studies considered individual sources of support beyond a dichotomy of informal and formal. When social support is dichotomized, informal supports appear to be more strongly linked to parental well-being than formal supports for parents of individuals with IDD (Seltzer & Krauss 1989; Heller & Factor 1993; White & Hastings 2004). Although parents value formal supports and often use them in the provision of care for individuals with IDD (Lefley 1997; Siklos & Kerns 2006), dissatisfaction with formal services, or long wait lists for increasingly limited supports, may intensify stress and burden for parents. Within the realm of informal supports, it is likely that different sources of informal support provide unique benefits. There is value in examining dimensions of social support individually as they may provide differing benefits when parents must cope with behaviour problems. Although it is argued that support can act as a buffer (e.g. Pearlin et al. 1990), studies of parents of adults IDD have looked only at direct associations and not tested the moderator hypothesis directly. If indeed, social support buffers parental burden, then parents with stressors should experience less burden in the presence of social support.
358 Journal of Applied Research in Intellectual Disabilities
This study expands on previous research on the relationship between behaviour problems and burden by exploring whether informal support moderates this relationship among parents of adults with IDD. Informal support was examined as a multidimensional concept, made up of different sources of support with potentially unique moderating effects. Beyond overall informal support, the specific effects of spouse/partner support, support from one’s own children and one’s parents were also explored. These are three common sources of informal support available to families, although limited research has focused on their unique benefits.
Methods Procedure and sample This study was reviewed and approved by the Queen’s University Health Sciences and Centre for Addiction and Mental Health Research Ethics Boards. When parents approached their local service access centres to apply for services for their son or daughter, agency staff gave parents an information sheet about the study. In some cases, staff mailed or emailed the information sheet to parents or provided the information by phone. If parents were interested in learning more about the study, they provided their contact information to the research team by mail or email. Once the research team offered the parent additional information on the study and the parent verbally agreed to participate, the consent forms and initial questionnaires were mailed. When signed consent forms had been returned to the research team, 30-min phone interviews with the parents were scheduled. The sample consisted of 212 parents seeking adult services for their son or daughter with IDD in Ontario, Canada. To be eligible for this study, the adolescent or adult son/daughter with IDD had to be 16 years of age or older and currently living at home. All individuals were verified as having IDD through the service access intake process. The individuals with IDD were mostly male (64.2%) and ranged in age from 16 to 53 years (M = 23.30, SD = 7.52 years). Approximately one-third (32.5%) had a diagnosis of autism spectrum disorder (ASD) and a quarter had a mobility impairment (25.1%). More than one-third (34.4%) had a concurrent mental health condition. The parents ranged in age from 38 to 91 years (M = 53.50, SD = 8.46 years). The majority of participating parents were mothers (85.4%) married to their child’s
other parent (65.4%), with the remainder reportedly being separated/divorced (24.8%), never married (4.9%) or widowed (4.9%). Parents reported a wide range of incomes, with 21.6% reporting an annual household income
