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Engagement in family activities: a quantitative,comparative study of children with profoundintellectual and multiple disabilities and childrenwith typical development
A. K. Axelsson,* M. Granlund* and J. Wilder*
*School of Health Sciences, Jnkping University, Jnkping, SwedenSwedish Institute of Disability Research, Jnkping, Sweden
Accepted for publication 18 January 2013
Keywordschild disability,comparison,engagement, familyactivities, participation,profound intellectual andmultiple disabilities
Correspondence:Anna Karin Axelsson,School of HealthSciences, JnkpingUniversity, Box 1026, 55111 Jnkping, SwedenE-mail:[email protected]
AbstractBackground Participation is known to be of great importance for childrens development and
emotional well-being as well as for their families. In the International Classification of Functioning,
Disability and Health Children and Youth version participation is defined as a persons
involvement in a life situation. Engagement is closely related to involvement and can be seen as
expressions of involvement or degree of involvement within a situation. This study focuses on
childrens engagement in family activities; one group of families with a child with profound
intellectual and multiple disabilities (PIMD) and one group of families with children with typical
development (TD) were compared.
Methods A descriptive study using questionnaires. Analyses were mainly performed by using
MannWhitney U-test and Spearmans rank correlation test.
Results Engagement in family activities differed in the two groups of children. The children with
PIMD had a lower level of engagement in most family activities even though the activities that
engaged the children to a higher or lesser extent were the same in both groups. Child engagement
was found to correlate with family characteristics mostly in the children with TD and in the children
with PIMD only negative correlations occurred. In the children with PIMD child engagement
correlated with cognition in a high number of listed family activities and the children had a low
engagement in routines in spite of these being frequently occurring activities.
Conclusions Level of engagement in family activities in the group of children with PIMD was lower
compared with that in the group of children with TD. Families with a child with PIMD spend much
time and effort to adapt family living patterns to the childs functioning.
Introduction
Participation is known to be of great importance for all chil-
drens development and emotional well-being. Children with
profound intellectual and multiple disabilities (PIMD) consti-
tute a heterogeneous group in terms of the patterns of impair-
ments as well as functioning and behaviour. In the definition of
PIMD, learning disabilities are combined with profound physi-
cal disabilities, sensory impairments and most often medical
complications (Nakken & Vlaskamp 2002, 2007). In our earlier
research on child participation in family activities, occurrence
of family activities (seen as opportunities for participation) and
bs_bs_banner Child: care, health and developmentOriginal Article doi:10.1111/cch.12044
2013 John Wiley & Sons Ltd 523
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the childs presence in these activities for children with PIMD
was studied. In comparison with a group of families with chil-
dren with typical development (TD) it was found that the
majority of listed family activities occurred less often in the
families with a child with PIMD. Moreover, the children with
PIMD were commonly present less often in the activities
(Axelsson & Wilder 2013). However, taking part in an activity
does not mean that the person is engaged in the activity in a
meaningful way or with co-participants (Perlman 2007). By also
investigating the childs engagement in family activities this
study was designed to increase the knowledge about participa-
tion in family activities of children with PIMD.
Participation and engagement
In the World Health Organizations (WHOs) framework for
measuring health and disability in children, the International
Classification of Functioning, Disability and Health Children
and Youth version (ICF-CY), participation is defined as a
persons involvement in a life situation (World Health
Organization 2007). However, due to its actual multidimen-
sional meaning the definition of participation made by WHO
has been considered to be quite vague. Hoogsteen and
Woodgate (2010) stated that in order to participate, a child with
disabilities must take part in something or with someone, they
must have a sense of inclusion, control over what they are taking
part in, and be working toward obtaining a goal or enhanced
quality of life. Likewise according to Maxwell and Granlund
(2011), participation includes a psychological perspective that
places more emphasis on the subjective experience of engage-
ment. Granlund and colleagues (2012) now indicate that for
measuring participation ICF might need a third qualifier to
describe the subjective experience of involvement, in addition
to the qualifiers capacity and performance. Empirical evidence
for the need of this third qualifier has been found (Maxwell
et al. 2012). Engagement seems closely related to involvement
and can be seen as expressions of involvement or degree of
involvement within a situation (Granlund et al. 2012). Engage-
ment, as an aspect in how activities are performed, has
been defined and operationalized in Childrens Engagement
Questionnaire (McWilliam 1991). In addition, Hammel and
colleagues (2008) found active and meaningful engagement/
being a part of to be one of the values included in participation
when capturing the insider perspective of participation of
people with disabilities.
A range of instruments has, in different ways, tried to capture
participation of children. A commonly used measure is Chil-
drens Assessment of Participation and Enjoyment (CAPE)
measuring childrens participation by using questions about
diversity, intensity (frequency), where, with whom and enjoy-
ment. In association there is the Preferences for Activity of
Children (PAC), which measures activity preference on the
same items as included in the CAPE (King et al. 2005). In a
comparison of school-aged children with and without disabili-
ties, King and colleagues (2009b) have concluded that the enjoy-
ment in the activity is determined by actual engagement, seeing
enjoyment and preference as distinct constructs. Coster and
colleagues (2011), in their recently developed instrument the
Participation and Environment Measure for Children and
Youth (PEM-CY), use questions about how often the child par-
ticipates, how involved the child is and whether the caregiver
would like to see changes. There are also instruments measuring
participation in school situations only, such as School Function
Assessment (SFA) (Coster et al. 1999; Hwang et al. 2002). No
available instruments provide in-depth information on partici-
pation in family activities explicitly. To conduct this study on
participation in family activities it was found to be necessary to
develop the instrument Child Participation in Family Activities
(Child-PFA) (Axelsson & Wilder 2013).
Participation in family activities and aspect associated tochild engagement
Influences on development can be expected to be greatest when
the child participates in everyday activities on a regular basis
and over an extended period of time (Bronfenbrenner 1995).
The childs participation in family activities is therefore of great
importance (Gallimore et al. 1989; Dunst et al. 2002). Family
activities include routines as well as other activities such as play
and family gatherings. Situation-specific experiences within
family activities, activity settings, offer contexts for the child to
learn about his or her own abilities and capabilities and about
others (Dunst et al. 2001). When incorporating characteristics
of the individuals in these physical settings they could be
defined as a niches (Wachs 2000) wherein proximal processes,
which denotes the interaction, take place. Such proximal proc-
esses, including presence and engagement, promote the childs
development and well-being (Bronfenbrenner 1999).
Both family characteristics and child characteristics influence
child participation. The childs closest network, the family, has
the task to construct routines that uphold consistent and satis-
fying daily activities for the child to participate and engage in.
This in turn is partly influenced by sociodemographic charac-
teristics such as family income and parents educational level
(Gallimore et al. 1989). The level of a persons participation also
varies as a function of the severity of the disability (Simeonsson
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et al. 2001; King et al. 2009a; Orlin et al. 2010). Moreover, a
frequently occurring low bio-behavioural state (half wake/low
alertness) has been suggested as one explanation for interaction
difficulties in children with PIMD (Munde et al. 2009;
Granlund et al. 2013). Besides, frequency of occurrence of
family activities and the childs presence in the activities have
been found to be lower in a group of families with a child with
PIMD compared with families with children with TD (Axelsson
& Wilder 2013). However, when using the CAPE, Majnemer and
colleagues (2008) have found that impairments and activity
limitations had little influence on enjoyment. Though, in their
study on children, most with mild motor dysfunction, greater
enjoyment in informal activities was found to be related to, e.g.
lower IQ and younger age. In a study by Keogh and colleagues
(2000), a child-driven model and a transactional model on chil-
dren with developmental delays and their families were com-
pared. The child-driven model was described as when child
characteristics predict family accommodation activities and the
transactional model as when family accommodations activities
and child-characteristics influence each other mutually. It was
found that the impact of child characteristics on the family
system was strong. The question now is what engagement in
family activities looks like for children with PIMD and how
family and child characteristics are related to this.
Objectives
The aim of the study was to compare child engagement in listed
family activities in two groups of families: one group of families
with a child with PIMD and one group of families with typically
developing (TD) children.
How does child engagement in family activities differ between
the two groups of children?
Are there any relationships between child engagement and
family income, mothers/fathers educational level and the
earlier studied frequency of occurrence of family activities in
the two family groups?
What are the relationships between child engagement and
child characteristics in the group of children with PIMD?
Method
A descriptive and comparative study of two groups of children
was performed. The study was approved by the regional ethics
committee, Linkping, Dnr 2010/324-31. The instrument, par-
ticipants and procedure were the same as in our study on fre-
quency of occurrence of family activities and child presence
(Axelsson & Wilder 2013). However, in this conducted study the
engagement of the children was in focus (see Fig. 1).
The instrument
The Child Participation in Family Activities (Child-PFA) ques-
tionnaire was used. The instructions included a request to try to
put oneself in the situation of the whole family as well as in the
childs/youths situation and perspectives. A family activity was
defined as an activity that a family does together in everyday life,
when several family members take part. Besides the question
How engaged/involved is your child/youth? there were also
questions about how often the activities occurred, who usually
were present and about personal assistance and technical aids
(see Fig. 1).
Figure 1. The structure of Child-PFA.Number of listed family activities, group withPIMD (group with TD). Differences innumber of activities is due to PIMD-specificactivities. Fifty-three of the activities are thesame in both groups. Child-PFA, ChildParticipation in Family Activities; PIMD,profound intellectual and multiple disabilities;TD, typical development.
Childrens engagement in family activities 525
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The items in the Child-PFA had been developed through a
review of the literature, expert review, and pilot testing with
families of children with PIMD (Axelsson & Wilder 2013). To
measure the childs ability level the Abilities Index (Bailey et al.
1993) was used after some simplifications had been made in
scaling and phrasing, consistent with what emerged essential in
the pilot study. For example, in vision and motor skills compre-
hensive information was requested rather than information
about the childs left and right side. Concepts such as cognitive
ability were briefly explained as well. Abilities Index measure
functional abilities where high ratings indicate high degree of
difficulties/health problems. Questions about family demo-
graphics were also asked.
Participants and procedure
In the first group 60 families of a child aged 520 years with
PIMD participated and in the second group 107 families with
children with TD including a focus child aged 510 years par-
ticipated. The inclusion criteria of the first group were families
having a child, initially aged 020 years, with PIMD who made
use of the right to personal assistance according to the Swedish
act of Law LSS/LASS (SFS 1993:387; SFS 1993:389). The laws
make it possible for parents themselves to be personal assistants,
often besides traditional jobs, as well as to hire non-relatives
as personal assistants for the child. Recruitment was done by
contact with three national disability organizations: JAG, RBU,
FUB in Sweden. These organizations are not disability specific
but serve families who have children with a range of disorders.
Three hundred families fulfilled the inclusion criteria and
received a questionnaire, 65 questionnaires were returned. Of
these five were excluded (two due to no completion, two due to
divergent low age and one due to duplication), resulting in 60
participating families with a child with PIMD aged between 5
and 20 years. The childrens diagnoses included, among others,
CP, other syndromes where motor and intellectual disabilities
were combined as well as residual conditions after encephalitis.
No analysis of the attrition rate has been done. The inclusion
criteria in the second group were families of children with TD
with a focus child aged 510 years. Recruitment was done by
using convenience and snow ball sampling and 145 question-
naires were distributed to families in three different counties
in the southern parts of Sweden. One hundred and seven ques-
tionnaires were returned. In both family groups the question-
naire was answered by a parent or another adult that were a
member of the close family and all answers were provided con-
fidential (see Table 1).
The questionnaires distributed to the two groups were essen-
tially identical concerning the listed family activities; however, the
questionnaires distributed to the families with children with TD
included some modifications in order to match a sample without
diagnoses. In the questionnaire for children with TD the activities
exercising physical therapy at home,playing in the sandpit,going
to habilitation centre activities were taken away and the activities
doing homework and jumping on trampoline were added. This
resulted in that 53 of the activities were the same in both groups
and thus a comparison of these activities could be performed
between the two groups. The overall internal consistency of the
engagement questions in the Child-PFA was tested by using
Cronbachs alpha and resulted in 0.830 for the questionnaire
distributed to families with a child with PIMD and 0.809 for the
questionnaire distributed to families with children with TD.
Data analysis
Data analyses were performed with PASW Statistics 18 (spss).
Due to the ordinal data, the non-parametric MannWhitney
U-test was used in order to compare the differences in total
income and educational level between the two family groups. It
was also used when comparing child engagement in listed
family activities of the two groups. The actual levels of engage-
ment in the family activities as well as the earlier studied fre-
quency of occurrence of the activities (Axelsson & Wilder 2013)
were studied descriptively looking for median values. To look
at associations between these aspects, the median values were
checked and differences of >1 step were noted. To test relation-
ships between selected family and child characteristics and child
engagement, Spearmans rank correlation test was used. The
P-value was set to P < 0.05.
Results
Differences in levels of engagement
Children in the group with TD were more engaged in listed
family activities compared with children in the group with
PIMD. There were no activities with higher engagement in the
children with PIMD; however, the differences were found to be
descriptively less in proportion in the domains Organized
activities and Outdoor activities (see Fig. 2). The same activities
elicited higher or lower level of engagement, respectively, in
both groups, for instance the engagement in joking and fooling
around and going together to childs leisure activity were
estimated high in both groups, while doing the dishes was
estimated low (see Table 2).
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Table 1. Participant characteristics
Group of children with PIMD (N total = 60) Group of children with TD (N total = 107)
n (%) Mean (SD) n (%)
AnsweringMother 47 (78) 69 (65)Father 7 (12) 37 (35)Other adult 6 (10)
Child characteristicsGender
Male 37 (62) 53 (50)Female 23 (38) 53 (50)
Age (years)510 16 (27) 107 (100)1120 44 (73)
Functional mobility (15) 53 (88) 3.60 (1.59)Fine motor skills (15) 57 (95) 3.53 (1.47)Cognition (16) 60 (100) 4.73 (1.29)Communication, self (16) 60 (100) 5.25 (1.19)Communication, understand (16) 59 (98) 4.46 (1.37)Ability to decide (14) 58 (97) 2.88 (0.9)Vision (16) 60 (100) 3.43 (1.82)Hearing (15) 58 (97) 1.47 (1.11)Health (14) 60 (100) 2.15 (0.97)
Family characteristicsTotal annual income (EUR)*
90 400 13 (22) 12 (11)
Education, mother/fatherGrade 19 2 (4)/3 (5) 3 (3)/8 (8)Grade 1012 19 (33)/23 (42) 40 (38)/56 (55)University 35 (61)/28 (51) 61 (58)/37 (36)Other 1 (1)/1 (2) 2 (2)/1 (1)
*Converted from SEK 2011-02-01.PIMD, profound intellectual and multiple disabilities; TD, typical development.
Figure 2. Differences in engagement betweenthe children with PIMD and TD children.PIMD, profound intellectual and multipledisabilities; TD, typical development.
Childrens engagement in family activities 527
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Table 2. Level of engagement and frequency of occurrence of family activities, group with PIMD and group with TD
Family activity
Group with PIMD Group with TD
Child engagement Frequency of occurrence Child engagement Frequency of occurrenceMedian value
(25:e75:e percentile)*
Median value
(25:e75:e percentile)
Median value
(25:e75:e percentile)*
Median value
(25:e75:e percentile)
Indoor activitiesWatching a movie 3 (24) 3 (24) 3 (34) 2 (23)Watching TV 3 (23) 4 (34) 3 (34) 4 (34)Joking and fooling around 4 (34) 3,5 (34) 4 (34) 3 (34)Playing computer games 3 (24) 2 (13) 4 (34) 3 (23)Surfing the internet 2 (14) 1 (13) 3 (24) 2 (13)Doing handicraft 2 (23) 2 (13) 4 (34) 3 (24)Playing board games 2 (13) 1 (12) 4 (34) 2 (22)Playing with you or other adult 3 (24) 4 (34) 4 (34) 4 (34)Playing with children (friends/siblings) 3 (24) 3 (14) 4 (3.54) 3 (34)Playing with pets 2 (23) 2 (14) 3 (24) 1 (14)Story reading 3 (23.75) 3 (13) 4 (34) 3 (34)Singing 3 (24) 3 (14) 3 (34) 3 (23)Playing instruments 3 (23) 1 (13) 2 (1.253) 1 (12)Listening to music 3 (24) 4 (34) 3 (34) 3 (34)Dancing 2 (24) 1 (12) 3 (24) 2 (13)Exercising physical therapy at home 3 (23) 3 (14)
MealsBeing together in the kitchen 2 (23) 2.5 (23.75) 3 (23) 3 (23)Cooking/baking 2 (23) 2 (12) 3 (34) 2 (23)Doing the dishes 1 (12) 1 (13) 1 (12) 1 (12)Laying the table/cleaning away 2 (13) 2,5 (14) 2 (23) 3 (24)Having tea or coffee together 3 (24) 3 (24) 3 (34) 3 (24)Having breakfast together 3 (24) 3 (24) 3 (24) 3 (34)Having dinner together 3 (24) 4 (34) 3 (34) 4 (44)
RoutinesCleaning the house 1 (12) 1 (12) 2 (22) 2 (23)Doing morning routines 2 (23) 4 (44) 3 (23) 4 (44)Doing evening routines 2 (23) 4 (34) 3 (24) 4 (44)Packing school bag 1 (12) 3 (14) 2 (23) 3 (24)Picking up after playing 1 (12) 3 (14) 2 (23) 2 (23)Doing homework 3 (34) 3 (34)Lying down for rest 3 (23.75) 2,5 (13.75) 2 (13) 1 (12)Going by car to and from school 3 (23) 3 (14) 3 (23) 3 (14)Going by car at other occasions 3 (23.25) 3 (23) 3 (23) 3 (33)
Outdoor activitiesShopping for groceries 2 (23) 2 (13) 3 (23) 2 (23)Gardening 1 (13) 1 (12) 2 (23) 2 (12)Playing outside with other children 3 (23.75) 1,5 (12.75) 4 (34) 3 (33)Playing outside with you or other adult 3 (24) 2 (13) 4 (34) 2 (23)Going on a swing 3 (23) 1 (12) 3 (24) 1 (12)Bicycling 3 (24) 2 (12.75) 4 (34) 3 (23)Going for a walk 3 (23.5) 3 (24) 3 (23) 3 (23)Jumping on trampoline 4 (34) 2 (13)Playing in the sandpit 2 (13) 1 (11)Playing ball games 3 (24) 1 (12) 3 (34) 2 (23)
Organized activitiesGoing together to childs leisure activity 4 (34) 4 (24) 4 (44) 4 (24)Going together to siblings leisure activity 1.5 (13) 1 (12) 3 (24) 2 (14)Going together to parents leisure activity 2 (13.75) 1 (11) 3 (24) 1 (13)Going to church 3 (14) 1 (11) 2 (23) 1 (12)Going to habilitation centre activities 3 (23) 2 (13)
OutingsGoing to the playground 3 (24) 1 (13) 4 (34) 2 (13)Going shopping 3 (23) 4 (34) 3 (23) 4 (34)Going to the library 3 (24) 1 (12) 3 (34) 2 (13)Going to theatre/cinema/concerts 3 (2.754) 2 (12) 4 (34) 2 (12)Visiting friends who have children 3 (23) 2 (1.753) 4 (34) 4 (34)Visiting friends who do not have children 3 (23.5) 2 (12) 3 (24) 1 (12.25)Visiting relatives 3 (24) 3 (24) 4 (34) 4 (34)Going to parties 3 (24) 2 (22) 4 (34) 3 (24)Going out in the nature 3 (24) 1.5 (14) 3 (34) 3 (24)
Vacation and holiday cottageGoing on vacation 4 (2.54) 2 (13) 4 (44) 3 (23)Going to holiday cottage 3 (34) 1 (14) 4 (44) 1 (14)
*14, high ratings indicate high level of engagement.14, high ratings indicate high frequency of occurrence.Marked grey when there are differences >1 between the median values of engagement and frequency of occurrence, darker grey means low level of engagement in combination with a highoccurrence.PIMD, profound intellectual and multiple disabilities; TD, typical development.
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Engagement and family characteristics
Total income in the families with a child with PIMD was sig-
nificantly higher (P = 0.033) compared with the families withchildren with TD while parents educational level did not differ
significantly between the two family groups. These family char-
acteristics in relation to child engagement showed different pat-
terns in the two groups of children. In the children with PIMD
there were no positive correlations between the tested family
characteristics and child engagement in listed family activities.
This is to be compared with positive correlations in six activities
in the children with TD where, e.g. both fathers education and
mothers education were correlated to child engagement in
playing instruments and going to holiday cottage. Negative
correlations were found in seven activities in the children with
PIMD and the children with TD respectively, where only doing
handicraft and doing morning routines were found in both
groups however not in combination with the same family
characteristics (see Table 3).
To compare child engagement and the earlier studied fre-
quency of occurrence of the different family activities (Axelsson
& Wilder 2013), the median values of these aspects were ana-
lysed descriptively and a difference of >1 step of the ordinal
scales was looked for. In the families with a child with PIMD
there were nine activities with low occurrence of the activity and
at the same time a high child engagement while there were 10
activities with the same relationship in the families with chil-
dren with TD. Two of these activities, going to the playground
and going to holiday cottage, were the same in both groups. The
opposite relationship, with a low level of engagement in com-
bination with high frequency of occurrence, occurred only in
the children with PIMD in the domain Routines (see Table 2).
Engagement and child characteristics
Child characteristics were only tested for in the children with
PIMD. Of these, a positive correlation between engagement and
cognition were found in the highest number of listed activities.
Also health, communication, ability to choose and mobility
were found to be positively related to a number of activities. A
negative correlation was found between vision and engagement
(Table 4).
When exploring the different age groups in this study it was
found that in children with PIMD there was a significant dif-
ference in engagement in family activities in six of the 56 listed
activities depending on age. In younger children there was a
higher engagement in playing in the sandpit compared with
the older ones. Older children (aged 1120 years) had a higher
engagement in dancing, cleaning the house, picking up after
Table 3. Correlations: family characteristics and engagement in family activities, group with PIMD and group with TD
Family activity
Group with PIMD Group with TD
Familyincome
Education,father
Education,mother
Familyincome
Education,father
Education,mother
rs rs rs rs rs rs
Positive correlationsPlaying instruments 0.267* 0.435**Dancing 0.248*Going to the playground 0.243*Going to theatre/cinema/concerts 0.274*Going to holiday cottage 0.375** 0.400*
Negative correlationsDoing handicraft -0.334* -0.561** -0.268**Playing board games -0.340*Playing with pets -0.268*Being together in the kitchen -0.232*Laying the table/cleaning away -0.353*Doing morning routines -0.303* -0.229*Shopping for groceries -0.435**Playing outside with you or other adult -0.348*Bicycling -0.205*Visiting friends who do not have children -0.268*Going out in the nature -0.227*
*P < 0.05.**P < 0.01.PIMD, profound intellectual and multiple disabilities; TD, typical development.
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playing, lying down for rest and in going together to childs
leisure activity.
Discussion
Engagement in family activities differed between the two groups
of children. The children with PIMD had a lower level of engage-
ment in most family activities compared with the children with
TD, but the activities that engaged the children to a higher or
lesser extent were the same in both groups. In addition, child
engagement was found to correlate with family characteristics in
different patterns in the two groups. The children with PIMD had
a low engagement in routine activities although these activities
frequently occurred. In the children with PIMD child engagement
in listed family activities primarily correlated with cognition.
Differences in level of engagement
The lower level of engagement of the children with PIMD in
most family activities probably has several explanations. King
and colleagues (2009b) used CAPE to compare the enjoyment
(seen as a mechanism responsible for psychological engage-
ment) in formal and informal recreation and leisure activities in
school-aged children with and without disabilities. No signifi-
cant difference of enjoyment in informal activities between the
two groups was found. It has to be noted though that in their
study the children with disabilities did not have the same level
of difficulties and challenges as for children with PIMD. Also,
Majnemer and colleagues (2008) used CAPE in their study
including children with CP, although most with mild motor
dysfunction. They found that impairments and activity limita-
Table 4. Correlations: Child characteristics and engagement in family activities, child with PIMD
Family activityHealth Cognition Communication Vision Decisiveness Mobility
rs rs rs rs rs rs
Positive correlationsWatching movie 0.439** 0.364**Watching TV 0.348** 0.432** 0.334* 0.361** 0.397**Playing computer games 0.504** 0.520** 0.357* 0.533** 0.317*Surfing the internet 0.590** 0.548** 0.383* 0.386*Doing handicraft 0.447**Playing with pets 0.540** 0.596** 0.397*Story reading 0.318* 0.335*Being together in the kitchen 0.303*Doing the dishes 0.684**Laying the table/cleaning away 0.501**Having tea or coffee together 0.356*Having dinner together 0.341**Cleaning the house 0.402*Packing school bag 0.483**Picking up after playing 0.425**Gardening 0.452* 0.413* 0.483*Playing outside with other children 0.372*Playing outside with you or other adult 0.435**Going to the playground 0.617** 0.650** 0.620** 0.629**Going to the library 0.424*Going to theatre/cinema/concerts 0.409* 0.407*Going on vacation 0.521**
Negative correlationsPlaying with you or other adult -0.303*Exercising physical therapy at home -0.404*Cooking/baking -0.296*Going by car to and from school -0.362*Playing outside with you or other adult -0.322*Going for a walk -0.403**Going together to childs leisure activities -0.485**Going to habilitation centre activities -0.510**Visiting friends who have children -0.410*
*P < 0.05.**P < 0.01.PIMD, profound intellectual and multiple disabilities.
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tions had little influence on enjoyment. The different pattern of
engagement found in our study might be due to the focus on
children with PIMD. Children with PIMD are reported to have
difficulties in regulating sleep-wakefulness and spend more
time in less alert states (Roberts et al. 2005). Moreover, the
complex interactions of impairments that children with PIMD
experience may lead to a narrower repertoire of behaviours than
for children with TD. Thus, parents may have to assign meaning
to other kinds of expressions of children with PIMD. If a child
with PIMD lacks one or more of the common expressions for
complex feelings, such as curiosity, it may cause parents prob-
lems in how to interpret the childs reaction who thus receives
less feedback on being engaged (Iacono et al. 1998).
In our study, children seem to be more or less engaged in the
same activities regardless of disabilities or not. For example, in
both groups of children the level of engagement when joking
and fooling around was rated highest possible versus doing the
dishes lowest possible, indicating that child-focused activities
are more involving than routines. King and colleagues (2009b)
also found differences similar in children with and without
disabilities. Further, the results indicate that the types of activi-
ties that children prefer are impacted by family factors. Thus,
family activity patterns, i.e. naturally occurring learning situa-
tions, and childrens interests are important to assess in plan-
ning family-based interventions (Dunst et al. 2001).
Engagement and family characteristics
Only a limited number of family and child characteristics in
relation to child engagement were studied. Regarding the family
characteristics educational level and income, only in families
with a child with PIMD no activities with positive correlations
between these aspects and engagement were found, meaning
that for children with PIMD a higher family income or parent
educational level was not associated to higher child engagement
in family activities. It might be that family everyday life are so
affected by having a child with PIMD that the family activity
patterns usually related to socio-economic status are suppressed
and the system becomes more child-driven (Keogh et al. 2000).
Gallimore et al. (1989) argue that family constraints have to be
considered in relation to the goals and purposes of the family,
which might be related to socio-economic status. The goals and
purposes might also change as a consequence of child impair-
ments. For example, family life might become more focused on
making within home family activities available for the child.
This can explain why a negative correlation was found between
parental educational level and child engagement in home-based
family activities.
In the study by Majnemer and colleagues (2008) on children
with CP, a moderate positive relation between enjoyment in
informal activities and frequency and numbers of activities was
found. Considering this, it is interesting to note that in our
study it was found that a low level of engagement in children
with PIMD was seen in the frequently occurring routines. This
might be interpreted as in such routines the child is allowed to
have a more passive role, maybe in order to be given some kind
of rest. An alternative interpretation is that the parents are so
focused on doing the routine that they have difficulties to pay
attention to the relatively weak expressions of engagement by
many children with PIMD (Iacono et al. 1998).
Engagement and child characteristics
Concerning child characteristics, cognition was related to
engagement in a high number of family activities. The relation
between cognitive level and engagement in children with PIMD
may be dependent on the previously mentioned states of alert-
ness of the child (Granlund et al. 2013). Cognition and engage-
ment were primarily correlated in unstructured child driven
activities. Also the activities where there were correlations
between engagement and health, ability to choose, and mobility
could be seen as child driven. In contrast, the negative correla-
tions between engagement and vision were primarily seen in
activities that seem to be less child-driven. Instead, they include
an engaged adult, for example a parent who verbally described
the environment when going for a walk.
Child-PFA
Child-PFA was developed to get an insight in childrens lives in
their family micro setting. Frequency of occurrence of the
activities and the childs presence (Axelsson & Wilder 2013)
were not assumed to generate enough information about the
childs participation and thus questions about engagement were
included as well. The results of the children with PIMD were
compared with the children with TD to explore any possible
restriction in natural learning opportunities. The collected
information about who usually was present in the activities
could form the basis for future, deeper studies about participa-
tion in family activities. However, to really understand what
participation in family activities looks like observation studies
with interaction analyses are needed (Vlaskamp 2005; Wilder
2008; Munde et al. 2011). Regarding the outcome of interaction
childrens level of engagement is probably possible to observe
(Granlund et al. 2012). Though, ethical issues should be con-
sidered carefully since observations might interfere with family
life and personal integrity.
Childrens engagement in family activities 531
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Limitations of the study
The childs subjective experiences of engagement were in both
groups proxy estimated even though the child ideally should be
enabled to rate the perceived level of engagement himself or
herself (Simeonsson et al. 2003). Children with TD are not
expected to be able to report about their engagement until
around age 8 or 9 years old (Young et al. 1995) and for children
with PIMD proxy estimation is considered the only alternative.
In consequence we asked parents to be proxies and thus we had
to rely on that the parents knew their children very well and
were able to interpret the childrens expressions. Of all distrib-
uted Child-PFA questionnaires to the families with a child with
PIMD, just 20% were returned and included. A somewhat
higher attrition rate was reported by King and colleagues
(2009b) and in their study it was mainly due to no response or
not willing to participate. These high attrition rates may indi-
cate lack of time and energy in families to be involved in
surveys.
The two groups of children in the present study diverge con-
cerning age, level of needs and challenges. However, for children
with PIMD an increasing discrepancy between the developmen-
tal and chronological age is developed over time (Granlund
et al. 2013). In the studied group of children with PIMD, the age
differences were found to only partly affect child engagement in
activities, where an increased engagement was primarily seen in
the older group of children (aged 1120 years). Given that chil-
dren with TD normally become less engaged by age in family
activities, this result could in fact possibly mean that if only
younger children with PIMD had been included the result
would have diverged even more between the two groups. In
addition, it should be noted that a large number of statistical
tests were performed, increasing the risk of type I errors.
Conclusion
Participation has been recognized as an important overall
outcome for children and their families. In an earlier study
using the same sample the frequency of occurrence of family
activities and the childs presence were found to be lower in
families with a child with PIMD compared with families with
children with TD. In this study also a lower level of engagement
was found when comparing the two groups of children
however the pattern of engagement dependent on type of activ-
ity was the same. In this study it was found that the childs
cognitive level affected the level of engagement positively where
the opposite has been found in other studies, mostly including
children with less severe disabilities. In families with a child with
PIMD the family system appears more child-driven and the
effects of socio-economic status on family activity patterns seen
in families with children with TD are less pronounced. This in
turn might be due to the time and effort it takes in accommo-
dating everyday family life when having a child with PIMD.
When seeing the differences in both performance and engage-
ment between the two groups of children, the need for an
increased knowledge about how to improve participation in
children with PIMD emerges. Future research should focus on
finding facilitating factors for participation in family activities
for children with PIMD.
Key messages
Participation is known to be of great importance for all
childrens development and emotional well-being.
Engagement in family activities of children with profound
intellectual and multiple disabilities (PIMD) has not
explicitly been studied earlier in research.
This study found that engagement in family activities was
lower in children with PIMD compared to children with
typical development.
The children with PIMD had a low engagement in routine
activities although they frequently occurred.
It was also found that childs cognition affected the level of
engagement positively.
Acknowledgement
We are grateful to all the families who participated in this study
and for the cooperation with the disability organizations JAG,
RBU and FUB.
The study was financed by the Swedish Inheritance Fund.
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