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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

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

524 A.K. Axelsson et al.

2013 John Wiley & Sons Ltd, Child: care, health and development, 39, 4, 523534

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


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).



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.



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.



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.



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.



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.



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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