Published for the British Institute of Learning Disabilities

Journal of Applied Research in Intellectual Disabilities 2012, 25, 2028

Longitudinal Study of Parents Impact on

Quality of Life of Children and Young Adults
with Intellectual Disabilities
Jane M. Cramm and Anna P. Nieboer
Institute of Health Policy & Management (iBMG), Erasmus University, Rotterdam, The Netherlands

Accepted for publication

6 May 2011

Background Earlier research has distinguished five

domains of Quality of life (QoL) for people with ID:
material well-being, development and activity, physical
well-being, social well-being, and emotional well-being.
We investigated parents perspectives on these domains
and QoL for children and young adults with ID and
hypothesized that parents well-being would be a predictive factor in QoL of their children with ID.
Methods Our longitudinal study administered questionnaires to parents at T0 (n = 147) and T1 (n = 108). The
inclusion criteria were: (i) the childs age 024 years and
(ii) the childs intellectual disability (IQ < 70 or IQ < 85
in combination with behavioural problems).
Results Social well-being of parents (P 0.001), changes
in parents social well-being (P 0.01) and changes in
childrens social well-being (P 0.05) were strong

Background
Quality of life (QoL) has increasingly become a focus
of research and application in the field of intellectual
disabilities (ID) (Schalock & Verdugo, 2002). Although
influenced by personal and environmental factors and
comprising subjective and objective components, the
primary factor affecting experienced QoL is the individuals perception (Schalock et al. 2002; Schalock,
1990). The interpersonal differences in QoL result in
variably applied or experienced core QoL domains
among individuals or groups, according to their special
needs. The operationalization of QoL can therefore
vary between individuals or groups (Schalock et al.
2002). This article investigates the QoL of children with
ID and how their parents own domains of well-being
can factor into it.
 2011 Blackwell Publishing Ltd

predictors of QoL for children with ID. Emotional wellbeing of children with ID (P 0.01), changes in childrens emotional well-being (P 0.01) and changes in
emotional well-being of parents (P 0.05) also predicted
QoL of children with ID. Material well-being of parents,
and health, development and activity of the children
were not predictors.
Conclusion Our study revealed that predictors of QoL
in children and young adults with ID occurred in the
following domains: physical well-being (children),
social well-being (parents and children) and emotional
well-being (parents and children).
Keywords: caregivers, intellectual
quality of life, well-being

disability,

parents,

Several domains of QoLs multidimensional construct

are consistently identified in recent literature. This literature supported the multidimensionality of QoL and
the validity of the basic domains for people with ID.
The five distinguished for people with ID are development and activity, and the material, physical, social and
emotional states of well-being (Felce & Perry, 1995;
Petry et al. 2005). To further our understanding of the
domains as they pertain to our population, we conducted a literature review. Studies of material wellbeing suggest that children from lower socio-economic
backgrounds have significantly more negative experiences of health and well-being compared with children
of higher socio-economic status (Spurrier et al. 2003;
von Rueden et al. 2006). Evidence is currently insufficient to determine whether this holds specifically for
children with ID, but parents of children with disabili10.1111/j.1468-3148.2011.00640.x

Journal of Applied Research in Intellectual Disabilities 21

ties do experience decreased financial resources (Curran

et al. 2001) in the form of caregiving expenses (uninsured health care, lost wages, career development
opportunity costs and the like) (Newacheck et al. 2004).
Literature examining development and activity emphasizes the importance of daily activity programmes and
education of children with ID (Felce, 1997; Schalock
et al. 2002). The use of physical and mental skills during
daily activities and education is closely related to personal development, which affects QoL (Felce & Perry,
1995). It comes as no surprise, studies of the physical
well-being of children with ID find that health status
affects their QoL (Arnaud et al. 2008; Houlihan et al.
2004; Vargus-Adams, 2005; Varni et al. 2005). Also
unsurprising, research on emotional well-being finds
that depressive feelings and loneliness among children
with ID affect their QoL (Petry et al. 2005; Schalock et al.
2002). Research also indicates that the emotional wellbeing of parents is affected (King et al. 1996; King et al.
1999) because of the enormous responsibility of providing the level of care required by children with ID. Their
needs can far exceed those of typical parental care, contributing to parental stress and lowering emotional
well-being (Cramm & Nieboer, 2011). Parental stress
and childrens behaviour problems show a bidirectional
relationship (Hastings et al. 2006). Lower parental stress
is associated with enhanced feelings of closeness; parents with higher emotional well-being levels score
higher on the levels of care, warmth and sympathy they
offer their children. Negative emotional interactions
between children with ID and their parents are characterized by criticism, hostility and emotionally overinvolved attitudes and are considered an important predictor of enhanced behavioural problems in children
with ID (Hastings & Lloyd, 2007). High levels of
expressed emotion in parents result in higher ratings of
aggressive destructive behaviour and depressive symptoms, which affects their QoL. Furthermore, children
with ID are extremely dependent on others for the gratification of their needs and therefore for their QoL
(Petry et al. 2005). Poor emotional well-being of parents
of children with ID can erode family relationships (Hastings et al. 2006; Hastings & Lloyd, 2007). These findings
from cross-sectional studies of QoL of children with ID
indicate that to fully understand QoL of children with
ID, we must therefore examine the emotional well-being
of both children and parents. The effects of parents
emotional well-being on QoL over time of these children are currently unknown. With respect to social
well-being, having social contacts and activities with

 2011 Blackwell Publishing Ltd, 25, 2028

peers reportedly affects QoL of children positively (Houlihan et al. 2004). Parents emotional well-being, however, is negatively impacted by restriction of their social
activities owing to caregiving tasks (King et al. 1999).
Earlier research on emotional well-being of parents of
children with disabilities in general has shown that the
social well-being of parents affects their emotional wellbeing in direct proportion (King et al. 1996), which in
turn affects the QoL of their children. Previous research
on caregiving in general has indicated that such tasks
do not necessarily result in poorer emotional well-being
outcomes so long as caregivers can continue their usual
important life activities, such as leading an active social
life (Nieboer et al. 1998). Because restricted social
activities may engender lower caregiver emotional wellbeing, which in turn negatively affects the QoL of children with ID, they should be included in our
investigation.
Arnaud and colleagues (2008) have suggested that
longitudinal studies are required to enhance our understanding of the relationships between QoL of children
with ID and the five well-being domains. Despite the
growing consensus that QoL is variable over time, information about the underlying mechanisms of change is
scarce. Researchers have not conclusively determined
whether QoL can remain stable over time (predictability) or by what means it may change (plasticity). In the
domain of personality and coping, plasticity has been
addressed in terms of adaption to ageing (Brandtstadter
& Rothermund, 2002), resilience to developmental stress
and coping with adverse life events (McCrea & Costa,
2010; Nieboer et al. 1999). It is the degree of intraindividual variability and plasticity that sets the limits and
thereby the stage for each individual to influence and
manage his or her development (Malcolm et al. 2005).
Study designs rarely acknowledge that emotional, social
and situational variables can change QoL of children
with ID.
Quality of life is generally accepted to be a subjective
concept that should be self-reported whenever possible
(Eiser & Morse, 2001). Accumulating evidence suggests
that children can reliably self-report QoL when their
emotional development, cognitive ability and reading
level are taken into account (Riley, 2004). Children with
ID or significant communication problems, however,
may not be able to provide reliable information; proxy
respondents are often necessary. Close relationships
between children and their proxies have been positively
correlated with high degrees of agreement between their
responses (Theunissen et al. 1998). Parents are therefore

22 Journal of Applied Research in Intellectual Disabilities

the preferred proxy informants among children with ID

(Eiser & Morse, 2001).

Specific Aim
Because there are only cross-sectional studies available
investigating the relationship between QoL of parents
and children or young adults with ID (hereafter called
children with ID), our study aims to determine whether
material well-being (parents), development and activity
(children), physical well-being (children), social wellbeing (children and parents) and emotional well-being
(children and parents) predict parent-reported QoL of
children with ID in a longitudinal perspective. We
hypothesize that the well-being levels of parents in these
domains will be significant predictors of QoL for children with ID over time.

Methods

parents and invited them to participate by telephone.

We failed to contact 41 parents, and 52 did not meet the
inclusion criteria. We arranged to administer the questionnaires to consenting parents by telephone or inhome interview. This strategy yielded 130 (64%) completed questionnaires for a total sample size of 147.
When queried, 72 eligible parents did not complete the
questionnaire because of the following factors: takes too
much time (n = 34); too great an emotional burden
(n = 9); does not appeal (n = 7); or unknown reason
(n = 22).

Measurements
The QoL of children with ID was evaluated by asking
parents perspectives on QoL (children), material wellbeing (parents), development and activity (children),
physical well-being (children), social well-being (children and parents) and emotional well-being (children
and parents).

Study design and population

Our longitudinal study measured QoL and its component domains by administering questionnaires to 147
parents of children with ID. Data were collected as part
of a longitudinal study on preferences on decision information and support in the Netherlands (van der Meij
et al. 2009; Nieboer et al. 2011). Parents were asked to
complete the questionnaire twice: upon agreement to
participate in the study (T0; n = 147) and about six
months later (T1; n = 108). We only used cases for which
both T0 and T1 data were available.
Participants were recruited from four cities in the
Netherlands: Rotterdam, Utrecht, Enschede and Amsterdam. The inclusion criteria were as follows: (i) the
childs age 024 years and (ii) the childs ID confirmed
by CIZ1 assessment centre (IQ < 70 or IQ < 85 in combination with behavioural problems). Families that
requested a CIZ assessment between August 2007 and
July 2008 and met the inclusion criteria were invited to
participate. In the first six months (AugustDecember
2007), 115 questionnaires were sent along with a letter
from the CIZ assessment centre that informed parents
of the care assessment. Only 17 (15%) parents completed the questionnaires; because they were distributed
by the CIZ, we do not know the reasons for the low
response.
We thus changed strategy. From January through July
2008, we sent information about the study to 295 eligible
1

Central Indication Organ for (long term) care services.

Quality of life (children)

The QoL of children with ID was assessed with a proxy
version of the Intellectual Disability Quality of Life (IDQOL-24) questionnaire (Hoekman et al. 2001). Cronbachs alpha as a measure for internal consistency
reliability was 0.85 in a study among children with ID
(Hoekman et al. 2001) and 0.74 among ageing people
with ID (van Puyenbroeck & Maes, 2009). We omitted
the three items on work aspects because the population
predominantly consisted of children. We also excluded
an item on satisfaction with medicine use. Respondents
answered each of the items on a five-point scale (very
dissatisfied, little dissatisfied, indifferent, little satisfied and very satisfied). Higher scores indicated higher
QoL (appendix IDQOL). Cronbachs alpha in our study
was 0.83 at T0 and 0.84 at T1.

Material well-being (parents)

Parents reported on their educational level and family
income.

Development and activity (children)

Respondents were asked about the daily activities of
their children (work, regular or special education, staying at home, special day-care centre). We dichotomized
this item into the subitems work school and other
activities.
 2011 Blackwell Publishing Ltd, 25, 2028

Journal of Applied Research in Intellectual Disabilities 23

Physical well-being (children)

Respondents were asked to rate their perception of their
childs health status on a scale of 010.

being (children and parents) and emotional well-being

(children and parents) on QoL of children with ID. Multiple regression analyses controlled QoL at T0.

Findings
Social well-being (children and parents)
To assess the childrens social well-being, the parents
were asked to rate how regularly their child met with
friends (four-point scale). The social well-being of parents was measured by asking them to report the number
of times in the past four weeks that their caregiving
tasks had hindered social activities like visiting friends
or family (six-point scale).

Table 1 summarizes the demographic characteristics of

the respondents and children. We also investigated
whether the 39 drop-outs between T1 and T0 differed
significantly in background characteristics from the
respondents who participated in both measurement
points (n = 108) (Table 1).
Analyses of the two groups (data available on
request) revealed no significant differences except for

Emotional well-being (children and parents)

A three-point scale was used to investigate the occurrence of fearful or depressive feelings of children with
ID as perceived by their parents. Experienced parental
stress among the caregivers was measured with the Nijmeegse Ouderlijke Stress Index (NOSI), a Dutch version
of the American Parenting Stress Index (PSI) (de Brock
et al. 1992). The validity and reliability of this instrument
have been demonstrated (Bhavnagri, 1999; Button et al.
2001). The PSI consists of several domains. For our
screening purposes, we used only the parental stress
competence and depression domains of the short-version PSI, which is associated with the parents feeling of
lack of acceptance and criticism from others for the way
he or she parents the child. Parents of children with
severe physical or ID often score high on these scales.
The Cronbachs alpha of the NOSI scale in our study
was 0.81 at T0 and 0.85 at T1. Higher scores indicated
higher stress levels.

Statistical analysis
Descriptive statistics are reported as mean values and
standard deviations (SDs). Differences between time
points were established with two-tailed t-tests. Because
the T0T1 interval was only 6 months during which
we expected parents income and education levels to
remain stable we included only T0 data in the regression model. Likewise, because we found no significant
differences between T0 and T1 in childrens daily activities (data available upon request), only T0 data were
included in the regression model. Multiple regression
analyses were performed to identify the determinants of
material well-being (parents), development and activity
(children), physical well-being (children), social well 2011 Blackwell Publishing Ltd, 25, 2028

Table 1 Characteristics of caregivers and children with

intellectual disabilities (n = 108)
Characteristic
Parents
Female
Relationship to child
Father
Mother
Other family
Foster mother
Other
Income [mean (SD)]
Low
Middle
High
Education level [mean (SD)]
Low
Middle
High
Child
Female
Age (years) [mean (SD)]
04
412
1218
1824
Level of functioning (IQ) [mean (SD)]
7085
5069
3549
2034
<20
Unknown
Development and activity (engage in work
school)

Total

80.6%
18.5%
75.0%
2.8%
2.8%
0.9%
1.87 (0.62)
20.6%
63.7%
15.7%
1.75 (0.80)
18.8%
53.5%
27.7%
38.0%
11.6 (6.4)
16.7%
41.8%
23.2%
18.5%
2.8 (1.0)
29.0%
23.4%
12.1%
3.7%

31.8%
73.1%

24 Journal of Applied Research in Intellectual Disabilities

Table 2 Differences in independent measures of quality of life of children with intellectual disabilities at T0 and T1 (n = 108)
T1

T0

Quality of life
Physical well-being (childs health status)
Social well-being (child)
Social well-being (parent)
Emotional well-being (child)
Emotional well-being (parent)

Differences between T0 and T1

Mean

SD

Mean

SD

Change (95% CI)

74.1
7.3
2.7
2.7
1.6
25.9

10.4
1.9
1.5
1.8
0.7
10.1

75.6
7.7
1.4
2.6
1.5
24.2

9.8
1.5
0.5
1.7
0.7
10.6

)1.7
)2.7
7.8
0.7
2.6
1.8

0.09
0.02
0.001
0.48
0.01
0.08

family income: drop-outs had significantly lower levels

(P 0.05).
The parent-reported QoL of children with ID in our
study was 74.1 10.4 at T0 and 75.6 9.8 at T1. Table 2
presents descriptive statistics and results of the t-tests of
physical well-being (children), social well-being (children and parents) and emotional well-being (children
and parents). Descriptive statistics of parents material
well-being (income and education) and childrens development and activity are reported in Table 1.
While the childrens physical well-being significantly
improved at T1 (P 0.05), their QoL did not improve.
Childrens social well-being (P 0.001) and the emotional well-being of both children (P 0.01) and parents
(P 0.05) were significantly lower at T1. While social
well-being did not significantly change overall, the
range ()0.30.6) of individual parents social well-being
scores varied widely (SD T0 1.8; T1 1.7); thus, social
well-being of some parents improved, whereas in others
it deteriorated.
Table 3 shows the predictors of QoL for children with
ID. The best predictor at T1 was clearly QoL at T0.
The social well-being of parents at T0 (P 0.001),
changes in parents social well-being (P 0.01) and
changes in the social well-being of the children
(P 0.05) were also strong predictors of QoL of children
with ID. Furthermore, the emotional well-being of children with ID at T0 (P 0.01), changes in the childrens
emotional well-being (P 0.01) and changes in social
well-being of the parents (P 0.05) strongly predicted
QoL of children with ID. Material well-being of parents
and development and activity and health of the children
were not predictors.

Discussion
We investigated the five previously identified (Felce &
Perry, 1995; Petry et al. 2005) domains of QoL over time

()3.30.3)
()0.7 to )0.1)
(0.91.6)
()0.30.6)
(0.00.3)
()0.23.5)

Table 3 Multiple regression analysis of quality of life of

children with intellectual disabilities, including the factors of
material well-being (parents), development and activity
(children), physical well-being (children), social well-being
(children and parents) and emotional well-being (children and
parents)
Beta
Control variable quality of life T0
Education T0
Family income T0
Daily activities (work or school) T0
Health status T0
Health status D
Child regularly visits friends T0
Child regularly visits friends D
Parents restricted social activities T0
Parents restricted social activities D
Fearful or depressive feelings (child) T0
Fearful or depressive feelings D
Parental stress T0
Parental stress D
Adjusted R2 for equation

0.41***
0.09
)0.04
0.01
0.19
0.19
0.08
0.17*
)0.34***
)0.28**
)0.31**
)0.28**
)0.09
0.17*
0.59

*P 0.05; **P 0.01; ***P 0.001.

among children with ID and hypothesized that parents

well-being would be associated with parent proxyreports of QoL of children with ID. As expected, the
well-being scores of parents in several QoL domains
were significant predictors of QoL of their children with
ID.
The strongest were initial social well-being values and
changes in the social well-being of parents. Poor and
worsened parental social well-being was found to be a
significant predictor of lower QoL among children with
ID. An active social life conveyed benefits for the emotional well-being of caregivers. Parents emotional wellbeing and stress levels are negatively impacted by
 2011 Blackwell Publishing Ltd, 25, 2028

Journal of Applied Research in Intellectual Disabilities 25

restriction of social activities owing to caregiving tasks

(King et al. 1996). Parental stress is known to increase
criticism, hostility and emotionally over-involved attitudes towards children with ID. This negative emotional
content of interaction between children with ID and
their parents is considered an important predictor of
poor QoL and enhanced behavioural problems in the
children (Hastings & Lloyd, 2007). As such, it is an
important underlying mechanism that explains QoL of
children with ID and must be considered when seeking
to identify and predict QoL changes over time (Arnaud
et al. 2008).
Parents of children with ID should be educated on
the importance of leading a satisfying social life and its
effects on their and their childrens QoL. All caregivers
in a sample of children with disabilities investigated by
Murphy and colleagues (2006) reported poor social and
emotional well-being owing to caregiving tasks. The
caregivers often overlooked their own chronic conditions and neglected their social and emotional wellbeing in favour of the disabled child. Most respondents
were concerned that their worsened well-being would
jeopardize their ability to meet the long-term needs of
the children. Our study confirmed this, demonstrating
that poor social well-being of parents of children with
ID indeed resulted in poorer QoL outcomes for their
children. Aligning with previous research (Felce &
Perry, 1995; Petry et al. 2005), enhanced social well-being
of children with ID also significantly increased their
QoL. Support for both parents and children of this
group is therefore important in improving their ability
to lead active social lives.
Also in accordance with earlier studies (Petry et al.
2005; Schalock et al. 2002), we found that the emotional
well-being of children with ID affected their QoL and
that changes in emotional well-being strongly predicted
their QoL. Moreover, our findings indicated that parents emotional well-being predicted the QoL of children
with ID. Specifically, lessened parental stress led to
higher QoL of the children. This could be explained by
earlier research, indicating that reduced parental stress
is associated with enhanced feelings of closeness; parents with higher emotional well-being levels score
higher on being caring, warm and sympathetic to their
children (Hastings et al. 2006), which positively affects
their QoL. Attempts to understand the QoL of children
with ID must therefore take this into account. Interventions that support and promote caregivers emotional
well-being may reduce QoL losses among the children.
A study on effectiveness of a stress-relief initiative for
primary caregivers of adolescents with ID showed that a
 2011 Blackwell Publishing Ltd, 25, 2028

stress management workshop is an effective way to

decrease levels of parental stress (Hu et al. 2010).
Our research indicates that the QoL domain scores of
children with ID were not the sole contributors to their
QoL; the social and emotional well-being of their parents is also a factor. These important and new findings
are consistent with previous cross-sectional studies in
the ID field (Arnaud et al. 2008), general disability
research (King et al. 1996; King et al. 1999), studies of
children with heart disease (Arafa et al. 2008) and investigations into healthy populations (Giannakopoulos et al.
2009). They emphasize the diverse effects that parental
emotional and social well-being may have on the QoL
of their children.
While we investigated the QoL domains of parents
and children with ID individually, earlier research has
indicated that parents financial and social well-being
affects their emotional well-being (King et al. 1999), suggesting a hierarchical structure of various domains for
the production of QoL (Kreuger et al. 2008; Nieboer et al.
2005). Higher levels of financial and social well-being
result in a higher level of emotional well-being, which
in turn improves the QoL of children with ID. This is in
accordance with the theory of social production functions that specifies peoples universal highest-order
goals (i.e. social and physical well-being) and the instruments for reaching the highest-order goals. It is important to do so because, in goal hierarchy, many wants
come to mind but they may be general objectives lower
in the hierarchy that are only important in certain
groups or cultures as instruments for reaching the
highest-order goals (such as material well-being or
self-determination) (Nieboer et al. 2005; Nieboer & Lindenberg, 2002). Future research is necessary to increase
our understanding of the exact relationships between
the QoL domains of parents and children with ID and
their hierarchical structure for the production of QoL of
children with ID.
Several limitations must be taken into account. Our
study was limited by dependence on the parents subjective assessments of their and their childrens wellbeing and QoL, which may have affected the accuracy
of our data. Parents perceptions of their childrens QoL
may be affected by the burden of caregiving and by
their own mental health and well-being (Kahn et al.
2004). Parental stress levels could have clouded parents
judgment of their childs QoL, and thus, the finding
that reduced parental stress leads to higher QoL of children with ID could stem from measurement bias. The
generalizability of our study findings is also limited
because our study sample consisted of parents and chil-

26 Journal of Applied Research in Intellectual Disabilities

dren with ID in the Netherlands. Furthermore, the difference in family income between participants completing the two measurements and drop-outs could
represent participation bias. This is in line with previous studies indicating that families with lower socioeconomic status are less likely to participate in research
in general and therefore tend to be under-represented
(Tadic et al. 2010). We used single questions to represent the QoL domains. For example, the childs social
well-being was assessed with a simple measure of how
often the child meets with friends. A more thorough
investigation capturing all aspects within the QoL
domains is called for. Finally, although this is a longitudinal study, data collection took place with a mere
average six months apart. Future longitudinal research
with a longer time period between data collection is
necessary to investigate long-term predictors of QoL
among children with ID.
Our study found no significant determinants of QoL of
children with ID in the material well-being or development and activity domains. However, because we did not
measure changes within them, it is possible that changes
in parents income or childrens development and activity
do significantly affect QoL outcomes, and future research
should investigate these potential relationships. Moreover, because parents of children with disabilities generally experience decreased financial resources (Curran
et al. 2001; Newacheck et al. 2004), relative income levels
of all households in this study might be lower than those
with non-disabled children. We also discovered that parents with lower incomes were more likely to drop-out
before T1, pointing to increased vulnerability.

Conclusion
Our study found predictors of QoL among children
with ID in the following domains: physical well-being
(children), social well-being (parents and children) and
emotional well-being (parents and children). We therefore confirmed that emotional, social and situational
variables can change QoL among children with ID. Our
study provides preliminary indications for interventions
that aim to improve certain QoL domains among parents of children with ID. Such interventions may consist
of social support, stress management and emotional
education for parents and should complement and augment such support for the children. Social support for
children with ID can be enhanced through interventions
in the direction of improving childrens resilience to
parental distress or poor social well-being levels.
Because this was the first study to explore the prediction

of QoL domains among both children with ID and their

parents, additional research should be directed at the
interaction between childrens and parents QoL and the
factors that change QoL among members of these families.

Authors Contributions
Anna Nieboer drafted the design of the study and
participated in data collection. Jane Cramm and Anna
Nieboer performed the statistical analyses and drafted
the manuscript. Both authors have read and approved
the final version of the manuscript.

Correspondence
Any correspondence should be directed to Jane
M. Cramm, Erasmus University Rotterdam (iBMG), Burgemeester Oudlaan 50, 3000 DR Rotterdam, The Netherlands (e-mail: cramm@bmg.eur.nl).

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