ContentServer (7)

Longitudinal Study of Parents Impact onQuality of Life of Children and Young Adultswith Intellectual DisabilitiesJane 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 pre-

dictive factor in QoL of their children with ID.

Methods Our longitudinal study administered question-

naires 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), changesin parents social well-being (P 0.01) and changes inchildrens social well-being (P 0.05) were strong

predictors of QoL for children with ID. Emotional well-

being of children with ID (P 0.01), changes in chil-drens emotional well-being (P 0.01) and changes inemotional well-being of parents (P 0.05) also predictedQoL 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 disability, parents,

quality of life, well-being

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 indi-

viduals 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.

Several domains of QoLs multidimensional construct

are consistently identified in recent literature. This liter-

ature supported the multidimensionality of QoL and

the validity of the basic domains for people with ID.

The five distinguished for people with ID are develop-

ment 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 con-

ducted a literature review. Studies of material well-

being suggest that children from lower socio-economic

backgrounds have significantly more negative experi-

ences 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 insuffi-

cient to determine whether this holds specifically for

children with ID, but parents of children with disabili-

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

2011 Blackwell Publishing Ltd 10.1111/j.1468-3148.2011.00640.x

Published for the British Institute of Learning Disabilities

ties do experience decreased financial resources (Curran

et al. 2001) in the form of caregiving expenses (unin-

sured health care, lost wages, career development

opportunity costs and the like) (Newacheck et al. 2004).

Literature examining development and activity empha-

sizes 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 per-

sonal 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 well-

being of parents is affected (King et al. 1996; King et al.

1999) because of the enormous responsibility of provid-

ing the level of care required by children with ID. Their

needs can far exceed those of typical parental care, con-

tributing 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; par-

ents 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 charac-

terized by criticism, hostility and emotionally over-

involved attitudes and are considered an important pre-

dictor 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 symp-toms, which affects their QoL. Furthermore, children

with ID are extremely dependent on others for the grat-

ification 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 (Has-

tings 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 chil-

dren are currently unknown. With respect to social

well-being, having social contacts and activities with

peers reportedly affects QoL of children positively (Ho-

ulihan et al. 2004). Parents emotional well-being, how-

ever, 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 well-

being 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 well-

being, which in turn negatively affects the QoL of chil-

dren with ID, they should be included in our

investigation.

Arnaud and colleagues (2008) have suggested that

longitudinal studies are required to enhance our under-

standing 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, infor-

mation about the underlying mechanisms of change is

scarce. Researchers have not conclusively determined

whether QoL can remain stable over time (predictabil-

ity) 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 intraindivid-

ual 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

Journal of Applied Research in Intellectual Disabilities 21

2011 Blackwell Publishing Ltd, 25, 2028

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 well-

being (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 chil-

dren with ID over time.

Methods

Study design and population

Our longitudinal study measured QoL and its compo-

nent domains by administering questionnaires to 147

parents of children with ID. Data were collected as part

of a longitudinal study on preferences on decision infor-

mation 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 Amster-

dam. 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 combi-

nation 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 com-

pleted 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

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 ques-

tionnaires to consenting parents by telephone or in-

home interview. This strategy yielded 130 (64%) com-

pleted 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 well-

being (parents), development and activity (children),

physical well-being (children), social well-being (chil-

dren and parents) and emotional well-being (children

and parents).

Quality of life (children)

The QoL of children with ID was assessed with a proxy

version of the Intellectual Disability Quality of Life (ID-

QOL-24) questionnaire (Hoekman et al. 2001). Cron-

bachs 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 satis-

fied 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, stay-

ing at home, special day-care centre). We dichotomized

this item into the subitems work school and otheractivities.1Central Indication Organ for (long term) care services.

22 Journal of Applied Research in Intellectual Disabilities


Physical well-being (children)

Respondents were asked to rate their perception of their

childs health status on a scale of 010.

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 par-

ents 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).

Emotional well-being (children and parents)

A three-point scale was used to investigate the occur-

rence of fearful or depressive feelings of children with

ID as perceived by their parents. Experienced parental

stress among the caregivers was measured with the Nij-

meegse 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-ver-

sion 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 regres-

sion model. Likewise, because we found no significant

differences between T0 and T1 in childrens daily activi-

ties (data available upon request), only T0 data were

included in the regression model. Multiple regression

analyses were performed to identify the determinants of


(children), physical well-being (children), social well-

being (children and parents) and emotional well-being

(children and parents) on QoL of children with ID. Mul-

tiple regression analyses controlled QoL at T0.

Findings

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

Table 1 Characteristics of caregivers and children with

intellectual disabilities (n = 108)

Characteristic Total

Parents

Female 80.6%

Relationship to child

Father 18.5%

Mother 75.0%

Other family 2.8%

Foster mother 2.8%

Other 0.9%

Income [mean (SD)] 1.87 (0.62)

Low 20.6%

Middle 63.7%

High 15.7%

Education level [mean (SD)] 1.75 (0.80)

Low 18.8%

Middle 53.5%

High 27.7%

Child

Female 38.0%

Age (years) [mean (SD)] 11.6 (6.4)

04 16.7%

412 41.8%

1218 23.2%

1824 18.5%

Level of functioning (IQ) [mean (SD)] 2.8 (1.0)

7085 29.0%

5069 23.4%

3549 12.1%

2034 3.7%

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 (chil-

dren and parents) and emotional well-being (children

and parents). Descriptive statistics of parents material

well-being (income and education) and childrens devel-

opment 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 emo-tional well-being of both children (P 0.01) and parents(P 0.05) were significantly lower at T1. While socialwell-being did not significantly change overall, the

range ()0.30.6) of individual parents social well-beingscores 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) andchanges in the social well-being of the children

(P 0.05) were also strong predictors of QoL of childrenwith ID. Furthermore, the emotional well-being of chil-

dren with ID at T0 (P 0.01), changes in the childrensemotional well-being (P 0.01) and changes in socialwell-being of the parents (P 0.05) strongly predictedQoL 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

among children with ID and hypothesized that parents

well-being would be associated with parent proxy-

reports 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 emo-

tional well-being of caregivers. Parents emotional well-

being and stress levels are negatively impacted by

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

T0 T1 Differences between T0 and T1

Mean SD Mean SD Change (95% CI) P

Quality of life 74.1 10.4 75.6 9.8 )1.7 ()3.30.3) 0.09Physical well-being (childs health status) 7.3 1.9 7.7 1.5 )2.7 ()0.7 to )0.1) 0.02Social well-being (child) 2.7 1.5 1.4 0.5 7.8 (0.91.6) 0.001Social well-being (parent) 2.7 1.8 2.6 1.7 0.7 ()0.30.6) 0.48Emotional well-being (child) 1.6 0.7 1.5 0.7 2.6 (0.00.3) 0.01

Emotional well-being (parent) 25.9 10.1 24.2 10.6 1.8 ()0.23.5) 0.08

Table 3 Multiple regression analysis of quality of life of

children with intellectual disabilities, including the factors of


(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 0.41***

Education T0 0.09

Family income T0 )0.04Daily activities (work or school) T0 0.01

Health status T0 0.19

Health status D 0.19Child regularly visits friends T0 0.08

Child regularly visits friends D 0.17*Parents restricted social activities T0 )0.34***Parents restricted social activities D )0.28**Fearful or depressive feelings (child) T0 )0.31**Fearful or depressive feelings D )0.28**Parental stress T0 )0.09Parental stress D 0.17*Adjusted R2 for equation 0.59

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



restriction of social activities owing to caregiving tasks

(King et al. 1996). Parental stress is known to increase

criticism, hostility and emotionally over-involved atti-

tudes 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 condi-

tions and neglected their social and emotional well-

being 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 par-

ents 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; par-

ents 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. Interven-

tions 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

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 par-

ents 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 inves-

tigations 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), sug-

gesting 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 func-

tions that specifies peoples universal highest-order

goals (i.e. social and physical well-being) and the instru-

ments for reaching the highest-order goals. It is impor-

tant 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 & Lin-

denberg, 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 sub-

jective assessments of their and their childrens well-

being 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 chil-

dren 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-



dren with ID in the Netherlands. Furthermore, the dif-

ference in family income between participants complet-

ing the two measurements and drop-outs could

represent participation bias. This is in line with previ-

ous studies indicating that families with lower socio-

economic 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 repre-

sent 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 longitu-

dinal 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 develop-

ment 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. More-

over, because parents of children with disabilities gener-

ally 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 par-

ents 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 there-

fore 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 par-

ents of children with ID. Such interventions may consist

of social support, stress management and emotional

education for parents and should complement and aug-

ment 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 fami-

lies.

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), Bur-

gemeester Oudlaan 50, 3000 DR Rotterdam, The Nether-

lands (e-mail: [email protected]).

References

Arafa M. A., Zahler S. R., El-Dowaty A. A. & Moneeb D. E.

(2008) Quality of life among parents of children with heart

disease. Health and Quality of Life Outcomes 6, 91.

Arnaud C., White-Koning M., Michelsen S. I., Parkes J., Parkin-

son K., Thyen U., Beckung E., Dickinson H. O., Fauconnier J.,

Marcelli M., McManus V. & Colver A. (2008) Parent-reported

quality of life of children with cerebral palsy in Europe. Pediat-

rics 121, 5464.

Bhavnagri N. P. (1999) Low income African American mothers

parenting stress and instructional strategies to promote peer

relationships in preschool children. Early Education & Develop-

ment 10, 551571.

Brandtstadter J. & Rothermund K. (2002) The life-course

dynamics of goal pursuit and goal adjustment: a two-process

framework. Psychological review 22, 117150.

de Brock A. J. J. L., Vermulst A. A. & Gerris J. R. M. (1992)

NOSI: Nijmeegse Ouderlijke Stress Index. Handleiding. Swets &

Zeitlinger, Lisse, NL.

Button S., Pianta R. C. & Marvin R. S. (2001) Partner support

and maternal stress in families raising young children with

cerebral palsy. Journal of Developmental and Physical Disability

13, 6181.

Cramm J. M. & Nieboer A. P. (2011) Psychological well-being

of caregivers of children with intellectual disabilities: using

parental stress as a mediating factor. Journal of Intellectual Dis-

abilities 15, 101113.

Curran A. L., Sharples P. M., White C. & Knapp M. (2001) Time

costs of caring for children with severe disabilities compared

with caring for children without disabilities. Developmental

Medicine & Child Neurology 43, 529533.



Eiser C. & Morse R. (2001a) Quality-of-life measures in

chronic diseases of childhood. Health Technology Assessment

5, 1157.

Eiser C. & Morse R. (2001b) Can parents rate their childs

health-related quality of life? Results of a systematic review

Quality of Life Research 10, 347357.

Felce D. (1997) Defining and applying the concept of quality of

life. Journal of Intellectual Disability Research 41, 126135.

Felce D. & Perry J. (1995) Quality of life: its definition and mea-

surements. Research in Developmental Disability 16, 5174.

Giannakopoulos G., Dimitrakaki C., Pedeli X., Kolaitis G., Rotsi-

ka V., Ravens-Sieberer U. & Tountas Y. (2009) Adolescents

wellbeing and functioning: relationships with parents subjec-

tive general physical and mental health. Health and Quality of

Life Outcomes 7, 100.

Hastings R. P. & Lloyd T. (2007) Expressed emotion in families

of children and adults with intellectual disabilities. Mental

Retardation and Developmental Disability Research Reviews 13,

339345.

Hastings R. P., Daley D., Burns C., Beck A. & MacLean W. E. Jr

(2006) Maternal distress and expressed emotion: cross-sec-

tional and longitudinal relationships with behavior problems

of children with intellectual disabilities. American Journal of

Mental Retardation 111, 4861.

Hoekman . J., Douma J. C. H., Kersten M. C. O., Schuurman M.

I. M. and Koopman H. M. (2001) IDQOL intellectual dis-

ability quality of life: the development of an instrument to

assess quality of life of people with an intellectual disability.

Nederlands Tijdschrift voor de Zorg aan verstandelijk gehandicap-

ten 27, 207225.

Houlihan C. M., ODonnell M., Conaway M. & Stevenson R. D.

(2004) Bodily pain and health-related quality of life in chil-

dren with cerebral palsy. Developmental Medicine and Child

Neurology 46, 305310.

Hu J., Lin J. D., Yen C. F., Loh C. H., Hsu S. W., Lin L. P.

& Wu S. R. (2010) Effectiveness of a stress-relief initiative

for primary caregivers of adolescents with intellectual

disability. Journal of Intellectual and Developmental Disability

35, 2935.

Kahn R. S., Brandt D. & Whitaker R. C. (2004) Combined effect

of mothers and fathers mental health symptoms on chil-

drens behavioral and emotional well-being. Archives of Pedi-

atric and Adolescent Medicine 58, 721729.

King G., King S. & Rosenbaum P. (1996) Interpersonal aspects

of care-giving and client outcomes: a review of the literature.

Ambulatory Child Health 2, 151160.

King G., King S., Rosenbaum P. & Goffin R. (1999) Family-cen-

tered caregiving and well-being of parents of children with

disabilities: linking process with outcome. Journal of Pediatric

Psychology 24, 4153.

Kreuger L., van Exel J. & Nieboer A. P. (2008) Needs of persons

with severe intellectual disabilities. A Q-methodological

study of clients with severe behavioural disorders and severe

intellectual disabilities. Journal of Applied Research in Intellec-

tual Disabilities 21, 466476.

Malcolm L., Johnson V. L., Bengtson P. G. & Coleman T. B. L.

(2005) The Cambridge Handbook of Age and Ageing. Cambridge

University Press, Cambridge.

McCrea R. R. & Costa P. T. (2010) Psychological resilience

among widowed men and women: a 10-year follow-up of a

national sample. Journal of Social Issues 44, 129142.

Murphy N. A., Caplin B. & Young P. C. (2006) The health of

caregivers for children with disabilities: caregiver perspec-

tives. Child Care Health Development 33, 180187.

Newacheck P. W., Inkelas M. & Kim S. (2004) Health services

use and health care expenditures for children with disabili-

ties. Pediatrics 114, 7985.

Nieboer A. & Lindenberg S. (2002) Substitution, buffers and

subjective wellbeing: a hierarchical approach. In: The Univer-

sality of Subjective Well-being Indicators: A Multidisciplinary and

Multinational Perspective (eds E. Gullone & R. A. Cummins),

pp. 157189. Kluwer Academic Publishers, Social Indicators

Book Series 16, Dordrecht.

Nieboer A. P., Schulz R., Mattews K. A., Scheier M. F., Ormel J.

& Lindenberg S. M. (1998) Spousal caregivers activity restric-

tion and depression: a model for changes over time. Social

Science and Medicine 47, 13611371.

Nieboer A. P., Lindenberg S. M. & Ormel J. (1999) Conjugal

bereavement and well-being of elderly men and women: a

preliminary study. Omega 38, 113141.

Nieboer A., Lindenberg S., Boomsma A. & van Bruggen A. C.

(2005) Dimensions of well-being and their measurement: SPF-

IL Scale. Social Indicators Research 73, 313353.

Nieboer A. P., Cramm J. M., Van der Meij B. & Huijsman R.

(2011) Choice processes and satisfaction with care according

to parents of children and young adults with intellectual dis-

ability in the Netherlands. Journal of Intellectual & Developmen-

tal Disability 36, 127136.

Petry K., Maes B. & Vlaskamp C. (2005) Domains of quality of

life of people with profound multiple disabilities: the per-

spective of parents and direct support staff. Journal of Applied

Research in Intellectual Disabilities 18, 3546.

Riley A. W. (2004) Evidence that school-age children can self-

report on their health. Ambulatory Pediatrics 4, 371376.

Schalock R. L. (1990) Attempts to conceptualise and measure

quality of life. In: Quality of Life: Perspectives and Issues (eds R.

L. Schalock), pp. 141148. American Association of Mental

Retardation, Washington, DC.

Schalock R. L. & Verdugo M. A. (2002) Handbook on Quality of

Life for Human Services Practitioners. American Association on

Mental Retardation, Washington, DC.

Schalock R. L., Brown I., Brown R., Cummins R. A., Felce D.,

Matikka L., Keith K. D. & Parmenter T. (2002) Conceptualisa-

tion, measurement & application of quality of life for persons

with intellectual disabilities: report of international panel of

experts. Mental Retardation 40, 457470.

Spurrier N. J., Sawyer M. G., Clark J. J. & Baghurst P. (2003)

Socio-economic differentials in the health-related quality of

life of Australian children: results of a national study. Austra-

lian and New Zealand Journal of Public Health 27, 2733.



Tadic V., Hamblion E. L., Keeley S., Cumberland P., Lewando

Hundt G. & Rahi J. S. (2010) Silent voices in health services

research: ethnicity and socioeconomic variation in participa-

tion in studies of quality of life in childhood visual disability.

Investigative Ophthalmology and Visual Science 51, 18861890.

Theunissen N. C. M., Vogel A. G. C., Koopman H. M., Verrips

G. H., Zwinderman A. H., Verloove-Vanhorick S. P. & Wit

J. M. (1998) The proxy problem: child report versus parent

report in health-related quality of life research. Quality of Life

Research 7, 387397.

Van der Meij B., Huijsman R. & Nieboer A. P. (2009) Informa-

tiebehoefte van ouders vertegenwoordigers van kinderen enjongeren met een verstandelijke beperking bij het kiezen van

een zorgaanbieder [Information preferences of par-

ents guardians of children and young adults with intellectualdisabilities who are choosing a care provider]. Nederlands Ti-

jdschrift voor de Zorg 3, 151165.

Van Puyenbroeck J. & Maes B. (2009) The effect of reminiscence

group work on life satisfaction, self-esteem and mood of age-

ing people with intellectual disabilities. Journal of Applied

Research in Intellect Disabilities 22, 2333.

Vargus-Adams J. (2005) Health-related quality of life in child-

hood cerebral palsy. Archives of Physical Medicine and Rehabili-

tation 86, 940945.

Varni J. W., Burwinkle T. M., Sherman S. A., Hanna K., Berrin

S. J., Malcarne V. L. & Chambers H. G. (2005) Health-related

quality of life of children and adolescents with cerebral palsy:

hearing the voices of the children. Developmental Medicine and

Child Neurology 47, 592597.

Von Rueden U., Gosch A., Rajmil L., Bisegger C. &

Ravens-Sieberer U. (2006) Socioeconomic determinants of

health related quality of life in childhood and adolescence:

results from a European study. Journal of Epidemiology and

Community Health 60, 130135.



Copyright of Journal of Applied Research in Intellectual Disabilities is the property of Wiley-Blackwell and itscontent may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder'sexpress written permission. However, users may print, download, or email articles for individual use.

ContentServer (7)

Documents

Transcript of ContentServer (7)