Chapter 8 - Understanding Individual Differences in Adaptation in ...

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From: Malin B. Olsson, Understanding Individual Differences in Adaptation in 

Parents of Children with Intellectual Disabilities: A Risk and Resilience Perspective. 

In Laraine Masters Glidden, editor: International Review of Research in Mental 

Retardation, Vol. 36, Burlington: Academic Press, 2008, pp. 281-315. 

ISBN: 978-0-12-374476-0 

© Copyright 2008 Elsevier Inc. 

Academic Press.

Author's personal copy 

CHAPTER 

EIGHT 

Understanding Individual Differences 

in Adaptation in Parents of Children 

with Intellectual Disabilities: A Risk 

and Resilience Perspective 

Malin B. Olsson* 

Contents 

1. Introduction 282 

2. Risk and Protective Factors in the Field of Families with 

a Child with ID 285 

2.1. Critical evaluation of Wallander and Varni’s risk 

and resistance model 286 

2.2. Three broad areas of risk and protective factors in families 

of children with ID 286 

3. Risk Factors 287 

3.1. Child and disability risk factors 287 

3.2. Socio-ecological risk factors 290 

3.3. Intrapersonal risk factors 292 

3.4. Summary: Risk factors 292 

4. Protective Factors 293 

4.1. Child and disability protective factors 293 

4.2. Socio-ecological protective factors 294 

4.3. Intrapersonal protective factors 298 

4.4. Summary: Protective factors 300 

5. Outcomes 301 

5.1. Depression in parents of children with ID 301 

5.2. Family quality of life 302 

6. Discussion 303 

6.1. Design improvements 304 

6.2. Why study resilience 306 

7. Conclusion 307 

References 307 

* Department of Psychology, Göteborg University, Göteborg, Sweden 

International Review of Research in Mental Retardation, Volume 36 

ISSN 0074-7750, DOI: 10.1016/S0074-7750(08)00008-6 

# 2008 Elsevier Inc. 

All rights reserved. 

281


282 Malin B. Olsson 

Abstract 

In this chapter, I focus on the theoretical perspective of risk and resilience as a 

framework for studying the processes leading to individual variation in adaptation 

of parents with children with intellectual disabilities (ID). Relevant literature 

related to parental adaptation to a child with ID is reviewed, organized, and 

discussed. The challenge of conceptualizing risk and protective factors as well 

as resilience is examined, and designs to improve future research are suggested. 

I argue that to understand the processes leading to individual variation 

in well-being in parents of children with ID, we need to do more within-group 

analyses and address the complex interplay of cumulative risk and protective 

factors. 

1. Introduction 

Two different views of parents of children with an intellectual disability 

are extant in research and in society at large. These parents are either 

pitied or seen as exceptionally strong and competent. In contrast, Mary Jo 

Herbert, a mother of a child with disabilities, expressed the importance of a 

balanced view of parents of children with disabilities in her essay in the 

American Association on Mental Retardation News & Notes in 2001. 

She wrote: 

Parents of children with disabilities have a serious image problem ... The 

image that I am referring to is that of the Exceptional Parent. But the idea 

that parents of children who are developmentally disabled are exceptional is 

a myth. The hard truth is that parents of kids with disabilities bring no 

inherent exceptional qualities to their role. What they bring is the same 

amount of patience, intuition, energy, and enthusiasm as any other parent 

gets...If there is anything exceptional about our lives it is the exceptional 

conditions under which we live them. We are ordinary parents trying to 

live ordinary lives under extraordinary circumstances...(pp. 7–8). 

The focus of this chapter is on understanding the individual differences 

in adaptation to these extraordinary circumstances. That is, what happens 

when parents with their individually different lives and experiences meet the 

extraordinary circumstances involved in caring for a child with intellectual 

disabilities (ID) 

Parents of children with disabilities often raise their children within the 

context of a powerful societal discourse that devalues disabilities and they 

are therefore expected to feel emotionally burdened (Green, 2007). Parents 

with positive attitudes toward raising a child with a disability are often 

pathologized as being unrealistic, in denial, and failing to accept their 

‘‘tragic’’ circumstances since professionals often view acceptance of the


Risk and Resilience 283 

child’s disability as the first step in a healing process (Green). But simple 

terms such as acceptance and denial do not capture parents’ experiences of 

raising a child with disabilities (Larson, 1998). Being a parent of a child with 

a disability does not only include a loss, as there is also the joy of having 

become a parent. Parents may be able to find benefits in having a child with 

a disability, and family, friends, and professionals who discourage them from 

doing so may be impeding the development of the positive aspects of caring. 

Larson argues that acceptance as borrowed from the conceptualization of 

the stages of grieving is not accurate in this instance, where instead of a 

certain future, parents face an indeterminate future for their child with a 

disability. She found that when mothers were asked what would improve 

their well-being, all of them wished for miraculous cures—that the child 

would walk and talk, that the child would be normal. Yet at the same time, 

they expressed a deep love and affection for their children just as they were. 

While embracing their child despite the disability, mothers simultaneously 

rejected the limitations of the disability, continuing to aspire to more typical 

mothering. There is no doubt that complex emotions and experiences are 

set in motion when a child with disabilities is born, but parents do not 

describe their child, per se, as the reason for increased stress or depression. 

Rather, it is societal expectations and the exceptional life situation that can 

lead to these experiences. 

Much research has focused on negative outcomes such as parental stress 

and depression in parents (mostly mothers) of children with disabilities. In a 

meta-analysis, Singer (2006) found consistent evidence of a 10% increase in 

the prevalence of depression in mothers of children with ID compared to 

control mothers. The greater risk of depression has traditionally been 

attributed to the emotional burdens of having a child with ID, rather than 

on the burdens imposed by negative public attitudes toward disability and 

inadequate support for the expensive and time-consuming task of caring for 

a child with special needs (Green, 2007). Even though there is an increased 

risk for a lower level of well-being, most parents adapt well to the challenge 

of raising a child with ID (Emerson, Hatton, Llewllyn, & Graham, 2006; 

Olsson & Hwang, in press; Hassall & Rose, 2005). A child with ID does not 

inevitably cause stress and depression in parents; the individual variation in 

parental well-being is great and depends upon a number of factors. Rather 

than focusing on the depressed or the competent parent it is important to 

learn more about the processes leading to different outcomes. 

Several researchers in the field of parenting a child with disabilities have 

asked for a greater focus on the positive aspects of caring for a child with ID 

(Hassall & Rose, 2005; Ylvén, Bjröck-Åkesson, & Grandlund, 2006). 

Positive psychology is a fairly new trend in psychology (Gillham, 2000; 

Snyder & Lopez, 2002) and has influenced recent work in the study 

of parents of children with ID (Green, 2007; Scorgie & Sobsey, 2000;



Stainton & Besser, 1998; Ylvén et al., 2006). A greater focus on positive 

aspects of caring for a child with ID is, of course, welcome, but the positive 

and negative aspects and outcomes of caring for a child with ID should 

preferably be addressed simultaneously. Having a child with a disability 

involves both joy and challenges, both rewards and stress [as in any other 

parenthood (Deater-Deckard, & Scarr, 1996)] and no benefit can be gained 

from neglecting either the positive or the negative impact that the parenting 

experience can have on the well-being of parents. Individual variation in 

the experience of positive and negative aspects is evident as well as individual 

variation in outcome (e.g., well-being), but we know very little about 

the processes leading to these differences. It is clear that some people extract 

positive psychological growth from difficult life experiences, not as a result 

of magic but as a result of determination to cope with stress and adversity as 

well as possible (Lazarus, 2003). Why psychological growth and good 

adaptation takes place in some parents of children with ID while others 

are more troubled is a complex question. 

A relevant theoretical construct to understand individual differences in 

reaction to stressful life conditions is resilience. Resilience means that some 

individuals have a relatively good psychological outcome despite suffering 

risk experiences that might be expected to bring about poorer outcomes. 

Resilience is an interactive concept that refers to a relative resistance to 

environmental risk experiences, or the overcoming of stress or adversity. 

It differs from traditional concepts of risk and protection in its focus on 

individual variation in response to comparable experiences (Rutter, 2006). 

Risk and protection both start with a focus on variables, with the implicit 

assumption that the impact of risk and protective factors will be comparable 

in everyone, and that outcomes will depend on the mix and balance 

between risk and protective influences. Resilience, by contrast, starts with 

the recognition of the individual variation in people’s response to the same 

experiences. The two perspectives do, however, go together since there is 

evidence that much of the variation in psychological outcomes can be 

accounted for by the summative effects of risk and protective factors. 

Resilience can only be studied if there is a thorough measurement of risk 

and protective factors. 

The aim of the present chapter is to discuss and organize results of a 

review of empirical research on parental adaptation to a child with ID 

within the theoretical framework of resilience and risk and protective factors. 

With increased knowledge about risk and protective factors in parents of 

children with ID, we can do more to minimize the risks and to strengthen 

the protective factors and thereby enhance the life situation of parents of 

children with ID and in the longer run even improve the well-being of the 

children themselves, whom we know are at markedly increased risk for 

poor psychological health (Emerson, 2003).



2. Risk and Protective Factors in the Field 

of Families with a Child with ID 

Several theoretical models have been used in research to facilitate the 

understanding of how different factors contribute to parental adaptation in 

families with children with ID. However, the concept of resilience is 

seldom used. There is agreement that a child with ID results in heightened 

stress in parents (Beckman, 1991; Cameron, Dodson, & Day,1991; Dumas, 

Wolf, Fisman, & Culligan, 1991; Dyson, 1991, 1993; Innocenti, Huh, 

& Boyce, 1992; Most, Fidler, Laforce-Booth, & Kelly, 2006; Plant & 

Sanders, 2007; Reddon, McDonald, & Kysela, 1992; Singer, 2006), and 

I use this consistent finding as a starting point for viewing this group as being 

exposed to stress which can be expected to lead to an increase in adverse 

outcomes. I further use the consistent finding of individual differences in 

adaptation (usually measured as depression) as a sign of resilience in many 

parents. Researchers have found that stress scores do not reliably predict the 

outcome (depression) for an individual parent. There are no objective 

stressors that affect everybody the same way, and whether a stressor will 

cause a stress reaction in the person exposed to it depends on the interplay 

between the stressful stimulus condition and the vulnerability/resiliency of 

the individual (Lazarus, 1999). 

Wallander and Varni (1998) have formulated a model in which the risk 

and protective factors are specific to the life situation of parents of children 

with disease/disability. They proposed the following risk factors for parental 

adjustment to childhood chronic illness/disability: 

a. Disability (they call it disease) parameters (type of diagnosis, severity, and 

prognosis) and care strain (the burden associated with caring for the child 

and extensive or frustrating contact with professionals) 

b. Psychosocial stress (factors directly or indirectly related to the child’s 

disability socioeconomic stress, loss of career opportunity, daily life 

stressors) 

They also proposed the following resistance factors: 

c. Parental stress-processing abilities (i.e., coping strategies, cognitive 

appraisals, problem-solving ability) 

d. Intrapersonal factors (general cognitive and affective patterns of behavior, 

or personality, i.e., dispositional optimism, self-perception, hope) 

e. Socio-ecological factors (i.e., social support, good family relations, marital 

satisfaction, formal support, and aspects of the broader community)



2.1. Critical evaluation of Wallander and Varni’s risk 

and resistance model 

I see at least four problems with Wallander and Varni’s model. The first 

problem concerns the appropriate placement of different factors. Wallander 

and Varni offer specification of risk and protective factors, but the research 

on families of children with ID arch over a larger area than defined in their 

model. Socioeconomic situation and demographic factors are, for example, 

hard to place in the model. The second difficulty has to do with discriminating 

between stress-processing abilities and intrapersonal factors, as those 

concepts are very closely linked. The third difficulty is that risk and protective 

factors are not easily separated, but are rather better understood as a 

continuum where high scores can mean protection and low scores risk. 

For example, SES may be a risk factor if the family does not have the 

tangible resources, but a resilience factor if the family is economically welloff, 

can buy good medical and support care, etc. Similarly, Wallander and 

Varni view intrapersonal factors as sources of resilience, but they can be risk 

factors as well. Personality is a good example of this, where dispositional 

optimism can be a protective factor, but neuroticism can mean risk. Rather 

than trying to classify entire concepts such as socioeconomic status SES or 

personality as either risk or protective factors, it is important to study the 

level at which something goes from being a risk to having protective 

functions. The fourth problem has to do with outcome. Wallander and 

Varni (1998) simply call the outcome adaptation, but do not discuss or 

specify what that could be. An individual’s resilience or adaptation can be 

assessed with regard to many different outcomes as long as these are related 

to whether the individual functions in an adaptive or expected way despite 

having been challenged by risk/stress. 

2.2. Three broad areas of risk and protective factors 

in families of children with ID 

The literature on parents of children with ID arches over many aspects and 

is not easy to summarize into risk and protective factors. On the basis of the 

model of Wallander and Varni and my objections to it, I suggest that risk 

and protective factors for parental adaptation to a child with ID can be 

categorized in three broad areas (child and disability related issues, intrapersonal, 

and socio-ecological as depicted in Fig. 8.1), with further subcategories. 

I have organized the findings from the literature review in this 

chapter into a section on studied risk factors within each of the broad 

areas and a section on studied protective factors within each of the 

broad areas.



Child and 

disability related 

issues 

Intrapersonal 

factors 

Outcome 

Socioecological 

factors 

Figure 8.1 Risk and protective factors affecting parental outcome to a child with 

intellectual disabilities, categorized in three broad areas. 

3. Risk Factors 

3.1. Child and disability risk factors 

3.1.1. Child behaviors 

Children’s behavior problems influence parental stress levels more than 

children’s level of cognitive functioning or extent of physical disability 

(Baker et al., 2003; Blacher & McIntyre, 2006; Emerson, 2003; 

Eisenhower, Baker, & Blacher, 2005; Hastings, 2003; Herring et al., 

2006; Lecavalier, Leone, & Wiltz, 2006; Lewis et al., 2006; Saloviita, 

Itälinna, & Leinonen, 2003). Communication difficulties, impaired social 

ability, difficult temperament, repetitive behavior, demanding patterns of 

behavior, and clinging are all child characteristics that have been found to 

increase parental stress (Hassall, Rose, & McDonald, 2005; Hodapp, 

Dykens, & Masino, 1997; Most et al., 2006; Plant & Sanders, 2007; 

Wheeler, Hatton, Reichardt, & Bailey, 2007). These are also symptoms 

found in most children with autism, which can explain why some studies 

investigating the impact of different diagnoses on stress levels have found 

that parents of children with autism experience more stress than parents of 

children with mental retardation without autism (Blacher & McIntyre, 

2006; Dale, Jahoda, & Knott, 2006; Eisenhower et al., 2005; Sanders & 

Morgan, 1997; Siklos & Kerns, 2007). Maladaptive child behavior and 

parenting stress have been found to have mutually escalating effects on 

each other (Baker et al., 2003). Children’s behavior problems lead to stress 

in parents, and parents under stress adopt certain parenting behaviors that 

tend to reinforce the child’s behavior problems (Hastings, 2003; Wheeler 

et al., 2007). The parenting environment interacts with the characteristics of 

the child (in this case, child problem behavior) and the child’s behaviors



have critical impact on the parenting environment. It has also been found 

that parenting behaviors have a greater impact on children at developmental 

risk (Paczkowski & Baker, 2007), so that when mothers of children with ID 

are high in nonsupportive reactions their children have much higher levels 

of problem behavior than those in a nondelayed group (Paczkowski & 

Baker, 2007). 

3.1.2. Different diagnoses 

Both fathers and mothers rate their children with Down syndrome (DS), as 

compared to those with other types of ID, as having more positive personality 

traits and fewer maladaptive behaviors (Ricci & Hodapp, 2003). 

Families of children with DS consistently appear to cope better than families 

with children with other diagnoses (Dykens & Hodapp, 2001) at least when 

the child is young (Most et al., 2006). This DS advantage, although not 

demonstrated in all samples (Cahill & Glidden, 1996; Glidden & Cahill 

1998), is usually explained by DS being the most common chromosomal 

cause of mental retardation that is diagnosed at birth; it is a reasonably wellknown 

condition, with networks of parent-groups quite prevalent. Further, 

children with DS are often perceived to have easy temperaments and 

agreeable personalities and are sometimes reported as easier to bring up 

than are children with other ID (Dykens & Hodapp, 2001). Other explanations 

for the DS advantage involve older mothers being more mature and 

experienced and children with DS exhibiting higher levels of adaptive 

behavior than children with other ID etiologies (Corrice & Glidden, 2008). 

Different diagnoses may involve changes in the nature of the stress 

variable which, in turn, can influence the appraisal of stress. Lazarus suggests 

that familiarity, predictability, and clarity favor challenge, and unfamiliarity 

and long duration favor threat. This may help to understand why parents of 

children with DS are often found to experience less distress than parents 

of children with autism. DS is a well-known condition to most people, the 

cause is known, there is much information on prognosis, and homogenous 

parent support groups are available. Time of diagnosis and the diagnostic 

procedure also seem important for parental stress, where a lengthy period 

with uncertainty and a delayed diagnosis seem to make parents more stressed 

(Graungaard & Skov, 2006). Parents of children with autism have been 

found to experience higher levels of stress and depression than parents of 

children with other diagnoses (Blacher & McIntyre, 2006; Dale et al., 2006; 

Eisenhower et al., 2005; Sanders & Morgan, 1997; Siklos & Kerns, 2007; 

Olsson & Hwang, 2001). 

3.1.3. Objectively and subjectively measured burden 

Objective measures of caring demands and impairment severity (e.g., test 

results and clinical judgments) are typically not related to parents’ experience 

of stress (Hassall et al., 2005; Lecavalier et al., 2006; Luescher, Dede,



Gitten, Fennell, & Maria, 1999; Noojin & Wallander, 1997). In contrast, 

parents’ own subjective estimates of the impact of the child’s disability on 

daily life are typically related to parental stress and adaptation (Beckman, 

1991; Fisman, Wolf, & Noh, 1989; Plant & Sanders, 2007; Wallander & 

Venters, 1995). The more negative impact the child’s disability is perceived 

to have in their life, the more stress is likely to be felt by the parents. This 

supports the relational stress-processing model of Lazarus (Lazarus, 1999, 

2000; Lazarus & Folkman, 1984). They propose that there are no objective 

stressors, only potential stressors and the potential stressors are mediated 

through an appraisal process. Appraisal connotes an evaluation of the 

personal significance of what is happening. If we make the appraisal that 

what is occurring is a condition of stress, we define the situation as constituting 

harm/loss, threat, or challenge. In support of this, Plant and 

Sanders (2007) and Hassall et al. (2005) showed that psychological variables 

such as parental locus of control, parenting satisfaction, and parental cognitive 

appraisal of caregiving responsibilities had mediating effects on the 

relation between child’s level of disability and parenting stress. 

3.1.4. Daily hassles, time demands, and disruption of daily life 

Time is described as the factor most affected by caring for a child with ID. 

Time restrictions and the disruption of daily life are more frequent in 

parents of children with ID than in control families (Bristol, Gallagher, & 

Scholper, 1988; Carpiniello, Piras, Pariante, & Carta, 1995; Green, 2007; 

Gustavsson, 1989; Herman & Thompson, 1995; Sloper, 1999), and are 

related to adjustment problems in parents (Harris & McHale, 1989). 

Families with children with ID devote more time to childcare and spend 

less time in social activities and enjoy less active free time than parents of 

developmentally typical children (Barnett & Boyce, 1995; Green, 2007; 

Mactavish & Schleien, 2004; Sanders & Morgan, 1997). Parents also have 

much more contact with professionals and contrary to the intention, contact 

with professionals is often perceived as an additional source of stress if it is 

extensive or frustrating (Olsson & Hwang, 2003). 

3.1.5. Restrictions in life due to care demands 

As a result of the demands of caring, mothers of children with ID often 

report role restriction and limitations in pursuing a career (Barnett & Boyce, 

1995; Gustavsson, 1989; Herman & Thompson, 1995; Olsson & Hwang, 

2003, 2006; Reddon et al., 1992; Wallander & Venters, 1995). The more 

restricted the mother feels, the more likely she is to experience motherhood 

as frustrating, unhappy, and wearing (Breslau, Staruch, & Mortimer, 1982). 

One major obstacle for mothers’ employment is the difficulty in finding 

suitable daycare for their child with ID (Shearn & Todd, 2000) and reoccurring 

ill health and appointments. Hedov, Wikblad, and Annerén (2006) 

found that mothers of children with DS stayed home to care for their child



because of illness three times more often than control parents did for their 

nondisabled children. 

3.1.6. Difference in care strain in mothers and fathers 

Many studies of parents of children with ID have been conducted with 

mothers as sole informants, but among those involving both mothers and 

fathers, the results are mixed. Some report that mothers and fathers experience 

the same amount of stress as a result of bringing up a child with 

disabilities (Dyson, 1997; Fisman et al., 1989; Hadadian, 1994; Hastings, 

2003; Reddon et al., 1992; Wyngaarden Krauss, 1993), while some find that 

mothers experience more stress than fathers (Dumas et al., 1991; 

Gustavsson, 1989). A reduced level of responsibility has usually explained 

the lower stress levels in fathers. Compared to mothers, fathers are also 

typically less restricted by having a child with disabilities, and more often 

continue their involvement in professional life (Bristol et al., 1988; 

Gustavsson, 1989; Heller, Hsiesh &Rowitz, 1997; Olsson & Hwang, 2006). 

3.2. Socio-ecological risk factors 

3.2.1. Family functioning 

Poorer family functioning has been found to be associated with higher levels 

of stress in families with children with disabilities (Dyson, 1997; Sanders & 

Morgan, 1997; Wyngaarden Krauss, 1993). Some studies have found parents 

of children with disabilities to be at risk for marital and family conflict 

(Bristol et al., 1988; Fisman et al., 1989), while others do not (Dyson, 1991; 

Reddon et al., 1992; Sanders & Morgan, 1997; Van Riper, Ryff, & 

Pridham, 1992). In a meta-analytic review, Risdal and Singer (2004) concluded 

that there was an increase in divorce of about 6% in families of 

children with ID. Research in typical populations has found that when 

experiences of parenthood were not as positive as expected, there was a 

decline in marital satisfaction (Harwood, McLean, & Durkin, 2007). 

One hypothesis about the rather small increase in divorce rate for parents 

of children with ID is that for some parents, with weaker relations before 

the birth of the child with disability, the extra burden of a child with 

disability is an additional risk factor that further increases stress and marital 

tension and may lead to divorce. For other parents, with good relations 

before the birth of the child, the support the partners can give one another 

can serve as a protective factor that can actually bring the couple closer 

together. 

3.2.2. Social support 

Receiving unsatisfactory social support is strongly associated with difficulties 

in family functioning and parental mental health (Gowen, Johnson- 

Martin, Goldman, & Appelbaum, 1989; Gray & Holden, 1992; Reddon



et al., 1992). Parents of children with ID have been found to have more 

limited social networks then parents of typically developing children. They 

have more contact with family members and less contact with friends than 

parents of developmentally typical children (Herman & Thompson, 1995). 

Help from grandparents for informal childcare is valued and often necessary 

for mothers to be engaged in paid work outside the home (Mitchell, 2007). 

Participation in social and leisure activities is often restricted in parents of 

children with ID, in part due to lack of time and energy and accessibility 

(Mactavish & Schleien, 2004; Olsson & Hwang, 2003). 

3.2.3. Socioeconomic situation 

Poverty and single parenthood (Beckman, 1983; Olsson & Hwang, 2001) 

have been found to constitute risk factors for parental well-being. Financial 

difficulty is sometimes caused by the additional costs of caring for a disabled 

child in combination with decreased possibilities for both parents to take 

part in paid work (Beresford, 1996; Emerson, 2003; Harris & McHale, 

1989; Herman & Thompson, 1995; Sloper, 1999). Several studies have 

found poverty and parental unemployment to be related to stress in parents 

of children with ID (Birenbaum, 2002; Ellis, Luiselli, & Amerault, 2002; 

Emerson et al., 2006; Eisenhower & Blacher, 2006). Emerson et al. (2006) 

argued that the increased risk for poorer well-being among parents of 

children with ID could be attributed to their increased risk of exposure to 

poorer socioeconomic circumstances, such as poverty and poor housing 

quality. They suggested that failure to address socioeconomic position is 

likely to reinforce an overly pathological orientation in which children with 

ID are assumed to be a ‘‘burden’’ and in themselves a cause of maternal 

distress when it is actually the social circumstances that constitute the risk. 

3.2.4. Formal support 

Many families perceive that they do not receive the service and support to 

which they are entitled. The advocacy activities, including negotiations and 

paperwork necessary to provide children with the services needed, can be 

an additional draw on parental energy and time (Green, 2007; Olsson & 

Hwang, 2003). Areas of need that are often reported by parents as being 

unmet are as follows: information and advice about services, the child’s 

diagnosis and prognosis, how to help the child, financial and material 

support with housing and transportation, family support and practical help 

with respite care (Baxter, Cummins, & Polak, 1995; Douma, Dekker, & 

Koot, 2006; Herman & Thompson 1995; Lärka Paulin, Bernehäll Claesson, 

& Brodin, 2001; Olauson & Hvalstedt, 2001; Sloper, 1999; Stallard & 

Lenton, 1992; Summers et al., 2007). Research suggests that there exist 

inequalities in the extent to which people with disabilities and their families 

get access to benefits and support. Robertson et al. (2007) found that those 

with mental health, emotional or behavior problems, autism or multiple



health problems were less likely to receive a person-centered plan, and they 

were also less likely to benefit if they received a plan. 

3.3. Intrapersonal risk factors 

Lazarus (1999) suggested that the experience of stress can create a negative 

stress reaction, but only if the person does not have the possibility to cope 

successfully with the stress. The experience and consequences of stress are 

therefore dependent on the interplay of the environment (the potential 

stressors present) and the resources available to the individual to cope with 

the stressor. Parents of children with ID with high neuroticism have been 

found to use more of the coping strategies of escape-avoidance and accepting 

responsibility (which has a self-blame component). Both of these 

strategies are strongly related to poorer well-being (Glidden, Billings, & 

Jobe, 2006). Mothers who report high levels of stress often describe a 

tendency to avoid problems and feel out of control of their emotions. 

Possibly as a consequence of their higher levels of overall negative affectivity, 

these mothers tend to select strategies focusing on the regulation of 

emotions rather than on active problem solving (Noojin & Wallander, 

1997). Passive, emotion-focused coping, such as wishful thinking, selfblame, 

distancing, and self-control, have been found to have a negative 

relation to adaptation (Dykens & Hodapp, 2001; Noojin & Wallander, 

1997; Sloper & Turner, 1993). 

3.4. Summary: Risk factors 

Several risk factors for parental adaptation to a child with ID have been 

studied but often in isolation; that is, studies have looked at the impact of 

one or two of the risk factors on adaptation. With the exception of child 

behavior problems and poverty the relation between the proposed risk 

factors and parental adaptation is not very strong. Because risk factors tend 

to cluster in the same individuals (Sameroff & Rosenblum, 2006), focusing 

on a single risk factor or challenge does not address the reality of most 

people’s lives. One way of improving predictive power could be to count 

the number or assess the cumulative effect of risk factors in an individual’s 

life in relation to adaptation (Sameroff & Rosenblum, 2006). It is then 

important to consider not only risk factors associated with the disability but 

also other general risk factors such as socioeconomic circumstances and 

major life events or parental adaptation. 

The length of time that individuals have been exposed to a risk is also 

important since stress initiates a series of biological and psychological processes 

called allostatic load. Allostatic load, or the cost of wear and tear on 

the body produced by repeated activation of biological stress response 

systems, contributes to physical disease and emotional and behavioral



disorder (Sameroff & Rosenblum, 2006). For this reason, it is important to 

measure not only the exposure to possible risk factors but also the duration 

under which parents have been experiencing them. Therefore, child age 

and time since diagnosis may be important for the understanding of risk 

factors over time. 

Stress sets in motion complex biological processes that form the basis for 

adaptation and survival in the face of challenge. The human stress response 

shows high levels of specificity in reactivity to and recovery from stress. 

To determine the role of stress in processes of resilience (and vulnerability), 

careful attention must be given also to the type of stress that an individual 

encounters (Sameroff & Rosenblum, 2006). We need more careful work 

to differentiate, define, and operationalize the different risk factors that 

are common and salient in the lives of parents with children with ID. It 

may, for example, be that stressors related to the relationship with the child 

(such as behavior problems) have more adverse effect on parental health 

than time demands and daily hassles because they threaten more salient 

processes. 

4. Protective Factors 

4.1. Child and disability protective factors 

Beresford (1996) found that the positive aspects of caring for a child with 

disabilities involved the feelings of rewards and pleasures of parenthood, as 

well as a sense of moral responsibility. Parents who enjoyed their role and 

found it a satisfying experience viewed caring for their child as a challenge, 

something they enjoyed responding to. This strong feeling of meaningfulness 

is probably extremely positive for both the parents’ and the children’s wellbeing. 

There is anecdotal evidence that the emotional bond between the 

parent and the child with ID is the strongest protective factor of all, and 

supporting moments of joyful interaction between the parent and the child is 

probably a powerful way of supporting well-being in both parents and 

children (Beresford, 1996). Beck, Hastings, and Daley (2004) found that 

child pro-social behavior independent of behavior problems predicted 

maternal health, indicating the possible buffering effect of moments of 

joy and connection. Most parents are able to develop a secure and rewarding 

relationship with their child, even when the child has extreme social 

atypical behaviors as is the case with some children with autism (Biringen, 

Fidler, Barrett, & Kubicek, 2005) but the risk of an insecure attachment 

increases with degree of intellectual disability and severity of autistic 

symptoms.



4.2. Socio-ecological protective factors 

An essential question related to adversity and resilience is the individual’s 

development of an effective set of responses to stress. Central components of 

the stress response include the initial appraisal of the event and its emotional 

meaning, the ability to sufficiently regulate one’s emotions and arousal to 

initiate problem solving and gather more information, the fuller cognitiveaffective 

interpretations of the event, and one’s behavioral response 

(Greenberg, 2006). Masten and Obradovic (2006) have noted that among 

the most important resilience factors are these very cognitive and emotion 

regulation skills. 

4.2.1. Coping 

Upon exposure to stress, complex cognitive, behavioral, emotional, and 

biological processes are set in motion that serve the purpose of adaptation 

through either avoiding/withdrawing from the source of stress, acting on 

the source of stress to reduce its effects, or adjusting to the source of stress 

when neither escape nor confrontations are possible (Compas, 2006). 

Two fundamental processes are involved in self-regulation in response to 

stress. First, there is a set of automatic processes that are activated in response 

to stress that are related to but distinct from coping. Second, individuals 

initiate a set of controlled, volitional responses to stress. It is these voluntary 

responses to stress that are included in the concept of coping. Compas 

defined coping as a ‘‘conscious volitional effort to regulate emotion, cognition, 

behavior, physiology, and the environment in response to stressful 

events or circumstances.’’ These regulatory processes both draw on and are 

constrained by the biological, cognitive, social, and emotional development 

of the individual. According to Compas, coping includes three primary 

subtypes: primary control coping (problem solving, emotional expression, 

emotional modulation); secondary control coping, or efforts to adapt to the 

source of stress (acceptance, distraction, cognitive restructuring, positive 

thinking); and disengagement coping, or efforts to withdraw from the 

source of stress and one’s emotions (avoidance, denial, wishful thinking). 

Effective coping depends on being flexible (Lazarus, 1999). The best 

coping should be responsive to the requirements of the stressful situation. 

Some coping strategies are tied to personality variables, whereas others are tied 

to the social context. Certain coping strategies show significant within-subject 

consistency from encounter to encounter. For example, if positive reappraisal 

were employed by a person in one encounter, it is likely that the person would 

use it again in another encounter. However, other coping strategies, such as 

seeking social support, are used very inconsistently across different encounters. 

When conditions of stress are appraised as changeable—that is when they are 

viewed as falling within the person’s control—problem-focused coping



predominates. However, when the conditions are appraised as unchangeable, 

emotion-focused coping predominates (Lazarus, 1999). 

4.2.2. Coping in parents of children with ID 

The majority of parents with children with ID employ a variety of coping 

behaviors in their efforts to deal with the demands facing them (Beresford, 

1996; Reddon et al., 1992) and a larger repertoire and more use of coping is 

related to more positive adaptation (Taanila, Syrjälä, Kokkonen, & Järvelin, 

2002). The use of active or problem-focused coping strategies which 

emphasize efforts to seek social support, actively solve the problem, and 

maintain a positive outlook on life, appear to be recorded more frequently 

and to have a favorable effect on parental well-being (Dykens & Hodapp, 

2001; Glidden et al., 2006; Judge, 1998, Kim, Greenberg, Seltzer, & Krauss, 

2003; Luescher et al., 1999). Parents of children with ID are often reported 

to use denial and wishful thinking and this has usually been considered a 

negative coping strategy. But since the disability is an unchangeable condition, 

emotion-focused coping is theoretically likely to occur regularly. 

4.2.3. Personality 

The stress-processing abilities (coping) described above have been shown to 

be linked to personality factors which, in turn, have been shown to be 

strongly related to levels of well-being in parents of children with ID 

(Glidden & Schoolcraft, 2003; Baker, Blacher, & Olsson, 2005; Glidden 

et al., 2006; Hastings, 2002; Hassall & Rose, 2005; Oelofsen & Richardson, 

2006; Olsson & Hwang, 2002; Ylvén et al., 2006). The route from personality 

to well-being is thought to advance via the process of appraisal and 

coping. Parents with more optimistic outlooks, higher sense of coherence 

(SOC), more internal locus of control, and lower neuroticism may appraise a 

potential stressor as a challenge instead of a threat (or reappraise the situation 

all together), have more confidence in their ability to alter the source of stress 

and therefore use more active coping strategies (problem solving and social 

support). Noojin and Wallander (1997) found confidence in problemsolving 

ability to increase the likelihood of selecting more active strategies 

when faced with disability-related stress. Mothers who perceived themselves 

as effective problem solvers generally reported less distress. Mothers who 

reported better psychological adjustment described themselves as having 

high levels of confidence in their problem-solving abilities. The definition 

of personality is that it is a global and rather stable characteristic of the 

individual, whereas coping strategies, although linked to personality, are 

more variable across situations.



4.2.4. Positive view of life and self 

Research has indicated that despite the increased demands of parenting a 

child with a disability, many parents are able to report positive changes in 

themselves, their family or their lives because of the child with disabilities 

(Erwin & Soodak, 1995; Scorgie & Sobsey, 2000; Stainton & Besser, 1998). 

Some of the findings from parents who adapt and cope effectively suggest 

that positive reframing of thoughts and attitudes about their circumstances is 

important for adaptive parental coping (Hastings & Taunt, 2002). Personality 

factors influence this appraisal process. It has been shown that hardiness 

(Weiss, 2002), parental self-efficacy (Hastings & Brown, 2002), and parental 

SOC about their lives (Hedov, Anneren & Wikblad, 2002; Olsson & 

Hwang, 2002) are associated with fewer parental mental health problems 

in parents of children with ID. Parents who manage their lives effectively 

seem to show evidence of such personal traits as patience, flexibility, 

hopefulness, positive outlook, determination, and good problem solving 

skills (Beresford, 1994; Kwai-sang Yau & Li-Tsang, 1999; Noojin & 

Wallander, 1997; Tunali & Power, 1993). 

4.2.5. Sense of coherence 

There has been an increased interest in positive outcomes in parents and factors 

that contribute to ‘‘bonadaptation’’ (Erwin & Soodak, 1995; Scorgie & 

Sobsey, 2000). The salutogenic perspective of Antonovsky (1987) combines 

the interest of personality with the interest of positive adaptation. Antonovsky’s 

theory of SOC was developed to understand what makes people manage 

their lives despite high levels of stress, very similar to the concept of resilience 

but with a strong focus on intrapersonal protective factors. I will discuss 

the concept of SOC at some length as it is highly relevant to resilience. 

Antonovsky suggested that resistance resources all have one thing in 

common: They contribute to make stressors understandable. The cumulative 

experience of stressors as understandable will, with time, create a strong 

SOC defined as ‘‘a global orientation that expresses the extent to which one 

has a pervasive, enduring though dynamic feeling of confidence that (1) the 

stimuli deriving from one’s internal and external environments in the course 

of living are structured, predictable, and explicable; (2) the resources are 

available to meet the demands posed by these stimuli; and (3) these demands 

are challenges, worthy of investment and engagement’’ (Antonovsky, 

1987 ). The strength in people with a high SOC is not that they are 

especially successful in using one or the other kind of coping strategy, but 

that they approach the world with the generalized expectation that stressors 

are meaningful and comprehensible. Instead of rigidly relying on one 

coping strategy, people with a strong SOC are characterized by flexibility. 

High SOC has been shown to be related to high well-being in 

both mothers and fathers of children with ID (Olsson & Hwang, 2002;



Oelofsen & Richardson, 2006). But parents of children with ID have also 

been shown to have lower SOC than control parents (Olsson & Hwang; 

Oelofsen & Richardsson) with mothers having lower SOC than fathers. A 

strong relation between SOC and health has been reported in many different 

areas, and one study found that parents of children with ID with higher SOC 

levels had fewer registered days of sickness absence (Hedov et al., 2006). 

The first of the three central components of SOC, comprehensibility, 

refers to an experience of the confronted stimuli as making cognitive 

sense, as information that is ordered, consistent, structured, and clear, 

rather than chaotic, disordered, random, or accidental (Antonovsky, 

1987). The fact that insufficient information about services, the child’s 

conditions and prognosis are some of the most common unmet needs 

mentioned by parents of children with ID (Granlund, Roll-Pettersson, 

Steensson, & Sundin, 1994; Sloper, 1999), suggests that the feeling of 

comprehensibility is perceived as essential but often threatened in these 

parents. The theory can also help understand the result by Green (2004) 

who found that mothers with a high internal locus of control who also 

believed in chance reported less stress. In contrast, belief in chance without 

a strong internal locus of control related to increased subjective burden, as 

mothers may feel overwhelmed by the uncontrollable nature of life events. 

The positive results of psychoeducational interventions also suggest that 

increasing the mother’s knowledge about her child’s condition and strategies 

to handle difficult behavior can increase feelings of comprehensibility 

(Bristol et al., 1993; McIntyre, in press). Advice on how to handle difficult 

child behavior is probably also related to the second central concept of 

SOC namely, manageability. 

Manageability is the experience that one is in possession of resources 

adequate to meet the demands posed by the stimuli, the resources may be 

under one’s own control or controlled by others whom one feels one can 

count on. The support offered to parents in the above-mentioned studies 

helped parents to decrease difficult child behavior, probably with an 

increased sense of manageability as a consequence. The cognitive strategies 

described by parents who maintained a positive outlook on life, in a study 

by Beresford (1996), were clearly directed at increasing their feeling of 

manageability. These parents took one day at a time, did not dwell on 

difficulties, hoped for improvement and compared themselves to others 

worse off. Glidden and collaborators have demonstrated that the depression 

trajectories for mothers rearing children with ID were quite different 

depending on whether the child had been born into the family or had 

been knowingly adopted by it (Flaherty & Glidden, 2000). If the parents had 

knowingly adopted a child with disabilities they probably believed in their 

ability to manage the situation, and they also showed lower levels of 

depression initially. The feeling of mastery seems to be important for the 

feeling of manageability. In a study by Grant (1998), parents noted that the



moments they found to be most positive emerged as a result of developing 

strategies for coping with the challenge of raising their child. 

The third core concept of SOC, meaningfulness refers to an experience of 

shaping one’s destiny as well as one’s daily experience. This includes the 

extent to which one feels that life makes sense emotionally, that at least some 

of the problems and demands posed by living are worth an investment of 

energy. Not being able to pursue personal interests and goals in life may 

severely threaten the feeling of meaningfulness in life. Antonovsky proposes 

that the feeling of meaningfulness is the most central aspect of a strong SOC. 

The issue of meaningfulness can be illustrated by the study of Tunali and 

Power (1993), in which they found mothers’ abilities to redefine their goals in 

life to suit the actual circumstances and limitations of their daily lives had a 

strong relation to their well-being. If reaching one’s personal goals is 

prevented by the life situation, then either the situation itself or one’s goals 

must be changed to increase the feeling of meaningfulness. For many parents 

of children with ID, it is hard to change the life situation substantially enough 

to reach the personal ideals held before the birth of the child (Gustavsson, 

1989). The ability to undertake, and support for, changing personal goals, is 

important for parents of children with ID, but may not be easy in an 

industrialized society where personal value is often based on achievement, 

career involvement, and an active leisure-time (Olsson & Hwang, 2006). 

4.3. Intrapersonal protective factors 

4.3.1. Social support 

Mothers of children with ID who experience support from their partner and 

from social networks experience less stress and depression (Gowen et al., 

1989; Plant & Sanders, 2007; Reddon et al., 1992; Sharpley & Bitsika, 1997; 

Shin, 2002; Wallander & Venters, 1995; Weiss, 2002). Overall, parents seem 

to be quite content with the size, availability, and emotional support provided 

by their social networks (Baxter et al., 1995; Reddon et al., 1992). Many 

parents engage in parenting groups and parents report that quality of life can 

be enhanced through participation in social outlets that are accepting of 

the child’s disability (Mactavish & Schleien, 2004; Poston & Turnbull, 2004). 

4.3.2. Formal support 

Some studies have demonstrated the positive impact of service supports on 

families (Cowen & Reed, 2002; Ellis et al., 2002; Romer & Richardson, 

2002). In a Norwegian study, parents indicated that the formal support they 

received for themselves and their child was one of the most important 

factors for their coping with the situation (Kvande & Knutheim, 1995). 

Families appear to emphasize the interpersonal aspects of their relationships 

with providers as much as they emphasize the services themselves (Summers 

et al., 2007).



When parents are asked about important factors for good support they 

place much emphasis on flexibility, individuality, and partnership. It is 

important for parents that service providers view every family as unique 

and consider and respect that which the parents think is best for their child 

(Lärka Paulin et al., 2001). The more control families perceive themselves to 

have over the care and management of the services the more satisfied they 

are with the service (Blacher, Neece, & Paczkowski, 2005; Caldwell & 

Heller, 2003; Dunst & Dempsey, 2007; Nachshen & Minnes, 2005). 

Unfortunately, parents also indicate that they have to fight for the cooperation 

from, and control over, support services. Stronger and more 

persistent parents get more resources and more control (Knox, Parmenter, 

Atkinson, & Yazbeck, 2000; Lärka Paulin et al., 2001), which may explain 

the positive effect of confrontive coping strategies (Glidden et al., 2006). 

The rates of satisfaction by parents can be increased with improved 

service. Parents have, for example, evaluated centers that have models 

based on partnership, with recognition of the complementary knowledge 

and expertise of parents and professionals, as being very helpful and supportive 

(Sloper, 1999). Even if the support system could never totally 

eliminate the extra care associated in caring for a child with ID, it can 

facilitate the family’s situation and increase the family’s ability to choose the 

best way for families to live life with their child with ID. 

Not all parents need or want the same kind of services. Therefore, support 

programs should preferably be flexible enough to offer support that matches 

families’ actual needs (Granlund et al., 1994). It is also important to acknowledge 

that the needs change over time. Todd and Sheam (1996) suggested that 

support services should have two phases. The first phase should involve 

support to parents through sharing the parental workload, such as respite 

care. The second phase should involve supporting the parent and his/her 

personal aspirations and interests. Families who have a coordinator who can 

provide an overview and coordinate the family’s different needs, report better 

relationships with professionals. Those who do not have a coordinator report 

significantly more unmet needs (Sloper, 1999). 

4.3.3. Parenting support 

Support for families in the management of their children’s challenging 

behavior is imperative and should be provided before the behavior becomes 

so well established that intensive intervention from specialist service providers 

is required (Hudson et al., 2003; Soresi, Nota, & Ferrari, 2007). Parents 

who are helped to understand their children’s disability and to manage their 

child’s learning and behavior problems have been shown to have lower 

stress levels and better well-being (Hudson et al., 2003; Soresi et al., 2007). 

The weight of evidence suggests that cognitive behavioral treatment and 

interventions which bring parents together in groups with psychoeducational 

material reduce maternal distress (Singer, 2006). These interventions



are designed to strengthen confidence in problem-solving, and directed at 

supporting adequate coping, and have been proven useful (Bristol et al., 

1993; McIntyre & Phaneuf, 2008; Sloper, 1999). Apart from dealing 

explicitly with challenging behavior, families may need: (a) assistance with 

establishing structure in home routines; (b) assistance with dealing with 

stress; (c) aid with provision of respite care; and (d) assistance with engaging 

in advocacy (Soresi et al., 2007; Turnbull & Ruef, 1996; Williams & 

Wishart, 2003). Management strategies for children’s problem behavior 

may be affected by parents’ explanations of that behavior and their associated 

emotional reactions. If the children’s behavior is thought to be a 

consequence of the disability, then it may not be viewed as changeable. 

Consequently, interventions might aim to help parents generate alternative 

explanations for their child’s behavior, particularly to include consideration 

of environmental factors, and to enhance the emotional quality of parent– 

child relationships (Hassall & Rose, 2005). Hastings and Johnson (2001) 

showed that parents of children with autism reported lower levels of stress 

and pessimism when they had positive beliefs in the efficacy of an intensive 

behavioral intervention they were conducting. They, therefore, suggest that 

attention to parents’ efficacy beliefs about interventions is important if these 

interventions are to achieve their intended results. 

4.4. Summary: Protective factors 

Personality factors, cognition, and coping are the concepts so far studied 

most in relation to positive adaptation. Positive child characteristics and the 

impact of positive parent–child relationships are understudied area. Most 

studies reviewed have used lack of negative outcome (e.g., no depressive 

symptoms or low stress) as measures of positive adaptation. The absence of 

depression is obviously not a measure of good adaptation and more studies 

using outcome measures with the possibility of detecting variation in the 

positive end of the adaptation continuum are needed. Without an outcome 

measure allowing for variation in the positive end, it is difficult to actually 

assess resilience or protection. An example from developmental psychology 

can serve to illustrate: In a study of children of mothers with major mental 

illness a positive link was found between maternal warmth and child competence 

(Luthar, Sawyer, & Brown, 2006). This might logically suggest that 

mothers’ warmth served as a protective factor. However, when the distributions 

of children’s scores were examined, that was not what was found. 

The children experiencing high maternal warmth had competence scores 

close to the national average; they did not show ‘‘superior’’ competence. 

In contrast, those experiencing low warmth had very low competence. 

In this case, therefore, high warmth was not particularly promotive—rather, 

low maternal warmth connoted significant vulnerability. Examining the



distribution of scores vis-à-vis norms can be critical in illuminating whether 

the construct connotes exceptional well-being at one end, or exceptional 

dysfunction at the other. 

5. Outcomes 

Resilience is quintessentially inferential: Judging the resilience of a 

system requires criteria for identifying whether the system is doing whatever 

it is supposed to be doing (Masten & Obradovic, 2006). Important questions 

to ask in resilience research are as follows: Who decides or defines the 

criteria for judging good adaptation Does resilience refer to positive internal 

adaptation, positive external adaptation, or both In the literature on 

resilience in adults, the focus is usually on how the person herself feels. 

Prominent are indices such as subjective well-being, happiness, selfreported 

absence of distress, and so on. Few, if any, studies on resilience 

among adults have defined ‘‘doing well’’ in terms of others’ ratings of them, 

such as if they functioned as good spouses or parents (Luthar et al., 2006). 

In research on adaptation of families with children with ID the outcome 

variable most commonly discussed is parenting stress. From a resilience perspective, 

stress is not an outcome but a prerequisite for resilience. The second 

most frequently measured outcome is depression. Considering that there is 

agreement that a system has experienced serious risk (stress), positive mental 

health can be an accetable outcome measure of resilience. Depression, however, 

hardly meets this criterion, since there is no possibility of detecting any 

functioning better than no depression. Studies of family quality of life have a 

focus on positive functioning that fits well with the concept of resilience. Other 

adaptive adult behaviors such as positive parenting, participation in work 

and social life, and marital satisfaction should also be relevant as outcomes. 

5.1. Depression in parents of children with ID 

Depression is a normal response to certain life situations. One life event that 

sometimes leads to parental depression is the diagnosis of a child with a 

disability. Initially, there appears to be a grief reaction that is often intense at 

the time of diagnosis. The feelings of grief initially described by parents are 

similar to those experienced in loss situations and can include shock, 

disbelief, and anger (Baxter et al., 1995; Cameron et al., 1991) but are not 

present in all parents. It was previously thought that parents went through 

sequential stages of sorrow after learning about their child’s diagnosis, finally 

reaching a stage of acceptance (Blacher, 1984; Shapiro, 1983). Recent 

research suggests, however, that feelings of grief, disbelief, and shock 

associated with the diagnosis may not be finally resolved by all parents,



but may reoccur throughout the child’s and parent’s life (Baxter et al., 1995; 

Pianta, Marvin, Britner, & Borowitz, 1996). In addition, some parents 

experience mourning for the loss of the expected ‘‘perfect child’’; others 

experience feelings of guilt for not being a good-enough parent to the child 

and his/her siblings, anxiety over the child’s welfare and future, and/or 

sorrow over lost possibilities in the parent’s own personal life (Gustavsson, 

1989; Harris & McHale, 1989). These emotions and concerns can be found 

to a greater or lesser degree in all parents. 

Depression experienced by birth parents is not trivial and may lead to 

lifelong consequences. For example, two studies have reported that 20% 

of parents decided not to raise their child with DS, but instead to relinquish 

the infant for adoption (Dumaret, De Vigan, Julian Reynier, Goujars, & 

Aymé, 1998; Sadetzki et al., 2000). Although these studies did not specifically 

report parental depression scores, it is likely that parents who experience 

negative emotional reactions to their child’s diagnosis are more likely 

to make this decision (Glidden & Schoolcraft, 2003; Gustavsson, 1989). 

Most studies investigating the mental health of parents with children 

with disabilities have initially found higher scores for maternal depression 

compared to norms or to control groups (e.g., Blacher & Baker, 2002; 

Blacher & Lopez, 1997; Olsson & Hwang, 2001; Seltzer, Floyd, & Hindes, 

2004; Singer, 2006; White & Hastings, 2004; Veisson, 1999). There are, 

however, some studies, mostly involving parents of children with DS, that 

have not found differences in depression scores (Glidden & Schoolcraft, 

2003; Scott, Atkinson, Minton, & Bowman, 1997; Van Riper et al., 1992). 

Maternal reports of depression have usually been generalized to parental 

depression, and the very few studies which have included fathers have 

usually found normal depression scores or far fewer symptoms of depression 

in fathers of children with disabilities than in mothers (Dumas et al., 1991; 

Fisman et al., 1989; Gray & Holden, 1992; Olsson & Hwang, 2001, 2006; 

Veisson, 1999). Studies of parents with children with disabilities suggest that 

30% of mothers with children with disabilities score above the cut-off for 

depression compared to 20% in large samples of women of child-bearing 

age (Olsson & Hwang, 2001; Singer, 2006; White & Hastings, 2004; 

Veisson, 1999). Since mothers of children with ID are at higher risk for 

depression, the existing social service system for children with ID should 

specifically target this problem (Singer, 2006). 

5.2. Family quality of life 

Family quality of life has been proposed as an appropriate outcome for 

families of young children with disabilities. The construct implies a family’s 

(so far usually the mother’s) personal interpretation of well-being, life 

satisfaction, and interpersonal relationships (Summers et al., 2007). The 

few studies in the literature that have used family quality of life as an



outcome have found high ratings, suggesting that 39% rate their quality of 

life as excellent. Almost 65% of parents rate their family quality of life as 

moderate to very good (Summers et al., 2007). These figures actually 

correspond to the studies using depression as the outcome, which usually 

find that 65% of parents do not report elevated levels of depression. 

6. Discussion 

Several conclusions derive from this review. First, the good news is that 

it seems that studies using depression as well as studies using quality of life as 

outcomes agree that at least 65% of parents show resilience to being a parent 

of a child with ID, and 30% show adverse outcomes. Second, many 

different factors, concepts and measures are studied in the research on families 

of children with ID; and third, much of the research on parental adaptation to 

a child with ID lacks explicit conceptual definitions and theory. Without a 

theoretical framework, it will be difficult, if not impossible, to understand and 

empirically test the processes leading to individual differences in adaptation. 

It seems that some factors are studied over and over again (e.g., the impact of 

behavior problems, and the importance of marital support) without an 

explicit theoretical foundation but more as a result of positive findings and a 

match with hypotheses. But are there other important risk and resistance 

factors or processes leading to resilience that we are not studying 

In a review of findings from resilience research primarily in developmental 

psychology, Rutter (2006) suggests that resistance may derive from 

several different sources. One of these could be controlled exposure to risk 

(rather than the total avoidance of risk). It seems as if the key element is 

some form of prior successful coping with a similar challenge. Is this process 

of resilience relevant in parents of children with ID Perhaps having made a 

successful transition to parenthood before having a child with a disability 

could be related to resilience. Parents with a child with ID as a second or 

later child may be more resilient than first time parents with a child with ID. 

Relatedly, having previous exposure to disability such as the experience of a 

close relative, friend or neighbor experiencing disability could also be a 

resilience factor. 

Rutter (2006) further suggests that resistance may derive from traits or 

circumstances that are without major effects in the absence of the relevant 

risk or stress. The ability to be focused, organized, and able to work a way 

through the service system may be a skill that proves more useful to parents 

of children with ID than to their counterparts rearing typically developing 

children. Thus, it may be a protective factor and related to better adaptation 

in parents who need this skill than in those who do not.



Resistance may also derive from physiological or psychological coping 

processes rather than external risk or protective factors. Research needs to 

move away from a focus on external risks to a focus on how these external 

risks are dealt with by the individual in the form of coping mechanisms, 

mental sets, and the operation of personal agency. Studies suggest that 

personal agency and a concern to overcome adversity, a self-reflective 

style and a commitment to relationships are important features in resilient 

people. Parents who report positive aspects of having a child with ID usually 

mention a positive focus on their close relationships and having met new 

and interesting people whom they would not have met without their child 

with ID. Delayed resilience may also occur, deriving from ‘‘turning point’’ 

experiences in life, sometimes long after the initial risk experience. Such 

transformational experiences have been described in the literature on parents 

of children with ID by Wilgosh and Scorgie (2006). 

As already mentioned, judging the resilience of a system requires criteria 

for identifying whether the system is doing whatever it is supposed to be 

doing. In research on resilience in parents and families, it is important to 

critically ask what a resilient outcome is. Good parental mental health and 

well-being might be a relevant measure of resilience, as can quality of life. 

Parenting behaviors, parent–child attachment, or parental involvement in 

different life spheres might be just as relevant as would be a combination of 

several of these. Studies on resilience beyond the traditional well-being 

paradigm are necessary. A resilience approach requires researchers to 

develop methods of assessment and analyses of competence, assets, 

resources, promotive, and protective factors, and the diagnosis of resilience 

in addition to depression, risk, vulnerability, and stressors. 

6.1. Design improvements 

Several research designs and statistical methods have been used in resilience 

research in general (see Masten & Obradovic, 2006, for a review), but only a 

few have dominated in the field of families with children with ID. 

The following designs should be considered to improve research on resilience 

in parents of children with ID. 

Interaction findings (adversity a moderating variable) are by far the 

most commonly used ways of studying risk and protective factors in families 

of children with ID. Interaction findings highlight the striking exception 

of individuals with high adversity scores whose adaptive success appeared to 

be ‘‘off the gradient’’ (better than predicted by their level of risk). This 

method is, for example, used in a study by Baker et al. (2005) where it was 

found that maternal dispositional optimism moderated the relationship 

between child behavior problems and maternal depression. Interaction 

effects are conceptually very intriguing; in contrast, searching for them by 

using contrasting control groups can sometimes be counter productive



(Luthar et al., 2006). There is a need for more within-group analyses with 

discrete groups of people at (the same level of ) risk. When researchers work 

with particular at-risk populations, they seek to illuminate what makes a 

difference for these people—not whether these factors also affect comparison 

groups (Luthar et al., 2006). Comparative approaches that document 

group differences need to be complemented by within-group analyses 

illuminating the particularly critical process for individuals from given 

subgroups. Classic studies of resilience often identified a large risk group 

(such as parents of children with ID) and then compared a subgroup of 

individuals doing well across multiple criteria of positive adaptation to 

another subgroup in the sample that shares similar high-risk levels but is 

doing poorly in multiple ways. Comparisons of this nature often find strong 

similarities in the high competence groups, despite divergent adversity 

exposure, and striking differences between the resilient and maladaptive 

groups, despite shared risks or adversity exposure. As levels of adversity 

increase, the differences in the resources of resilient versus maladaptive 

individuals can be even greater. There is also a notably ‘‘empty cell’’ effect 

in such studies, suggesting that cases of low risk and poor adaptation are 

much less common than cases of high-risk and good adaptation (Masten & 

Obradovic, 2006). 

There are different ways of analyzing the impact of individual or cumulative 

effect of risk factors (Klebanov & Brooks-Gunn, 2006). Samples can 

be divided based on single risk factors known to be a strong predictor of 

poor adaptation, such as poverty or child behavior problems. The effects of 

risk can then be considered separately for poor and more affluent families 

because of the greater risk experienced as a result of poverty. Otherwise, the 

effects of the studied risk factor may be obscured. 

Single case studies are seldom used but can serve as powerful heuristic 

and communication tools, illustrating dramatic turning points in a process 

when powerful risk factors are eliminated or protective factors are boosted 

as, for example, in interventions. If they are used sparingly and with full 

recognition of their limitations they can enrich the more usual quantitative 

approaches. 

Rutter (2007) argues that theory driven research is the key for beginning 

to address causality. Causal graphs spelling out the implications of the 

background knowledge or theory can lead to statistical modeling that can 

increase or decrease the likelihood of the causal inference being correct. 

Rutter (2007) also discusses the use of propensity scores to equate groups on 

the basis of likelihood of exposure to risk rather than controlling for 

differences in risk. Sensitivity analyses to quantify how strong a confounder 

would have to be to overturn a causal inference may also be very helpful. 

He further proposes the use of regression discontinuity as a quasiexperimental 

design that could be very useful for making causal inferences.



6.2. Why study resilience 

There is consensus that parents (or at least mothers) of children with ID 

constitute a risk group in terms of depression and poor well-being (Singer, 

2006). At the same time, there is also consensus that the majority of parents 

are doing well. To understand the individual differences and the processes 

leading to these different outcomes, we need to better understand the 

factors associated with positive outcomes and resilience. This is also the 

route toward designing and studying the effect of interventions aimed at 

improving the lives of families of children with ID. 

With very few exceptions, there is no such thing as a single necessary and 

sufficient cause (Rutter, 2007). Even though mothers of children with ID 

are at higher risk for depression, the birth of a child with ID does not 

‘‘cause’’ depression in mothers. It is not just that depression is only one of 

several possible outcomes for parents, but also that several different causal 

pathways may all lead to depression. Furthermore, almost all causal pathways 

involve several different phases. For example, the pathway to depression 

does not begin with a causal risk factor, but it must be preceded by the 

pathway leading to exposure to the risk factor. Thus, if the hypothesized 

cause is, say a child with ID in the family, the risk may lie in either genetic, 

societal influences or individual propensities or often a complex mixture of 

all. This complexity is further exacerbated because it is also the case that 

influences are often reciprocal, with the causal arrow running in both 

directions. 

Luthar et al. (2006) proposed four guidelines for the selection of risk and 

protective processes in future resilience research. First, given a particular atrisk 

condition (such as a child with ID), there must be concerted attention 

to factors that are salient in that particular life context, those that affect a 

relatively large number of people in that group (e.g., daily hassles, service 

provision, or child behavior problems). Second, we should prioritize attention 

to indices that are relatively malleable—risk modifiers amenable to 

change via external interventions or ‘‘modifiable modifiers’’ (e.g., child 

behavior problems may be modified by parenting practices). Third, focus 

should be afforded to indices that tend to be relatively enduring in the life 

situation (parenting practices). Finally, it is critical to attend to indices that 

are generative of other assets, those that set into motion ‘‘cascades’’ wherein 

they catalyze other protective processes (if behavior problems are prevented 

or minimized the child will have less negative impact on the family and all 

family members can have more possibilities of engaging in positive interactions 

and activities). Luthar et al. concluded that close supportive family 

relationships clearly meet all these four criteria, as do probably other aspects 

such as the formal support system in the lives of families of children with ID. 

The one-sided focus on maladjustment in literature on families of 

children with ID is addressed by Glidden (1993) in which she challenged



the notion that families with a child with ID are always strained. She argued 

that the persistence of the maladjustment hypothesis has continued despite 

substantial methodological problems with the research on which the belief 

is based. Overall adjustment or maladjustment is dependent not only on the 

presence or absence of stress but also on the presence or absence of positive 

outcomes. Positive outcomes can coexist with negative outcomes but may 

never get measured because investigators are not hypothesizing that they are 

present. The discourse of disability as a tragedy has been reproduced by 

researchers by the focus on maladjustment. The resilience perspective offers 

a possibility of acknowledging the extra stress and strain in families of 

children with ID at the same time as it puts the focus on the factors that 

contribute to positive outcomes in a majority of the parents. 

7. Conclusion 

In this chapter, I have proposed a theoretical model of resilience to 

help interpret past findings and guide future research on families of children 

with ID. Thus, far most family research has zoomed to a narrow focus on 

factors important to understand the 30% of mothers with depressive symptoms. 

I think we need to zoom out to see the bigger picture. Risk and 

protective factors should be addressed simultaneously with robust outcome 

measures that allow for variation in the negative as well as in the positive end 

of the well-being spectrum, in both parents. We need to do more within 

subgroup analyses on parents who are doing well and those doing less well. 

To do this, we need bigger samples. We also need to include fathers in 

research since there is consistent evidence that the experience and outcomes 

are sometimes different for mothers and fathers. Also essential is more 

research on the importance of positive relations between the child with 

ID and his or her parents, and intervention studies designed to strengthen 

this relationship. 

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