Content validity of the instrument ‘Picture My Participation’ for measuring participation of children with and without autism spectrum disorder in mainland China

Abstract

Background

Picture My Participation (PMP) is a valid instrument for measuring participation of children with disabilities, but it has not yet been evaluated for its content validity for children with autism spectrum disorders (ASD) in mainland China.

Aim

To explore the content validity of the simplified Chinese version of PMP (PMP-C; Simplified) for children with ASD and typically developing (TD) children in mainland China.

Methods

A sample of children with ASD (n = 63) and TD children (n = 63) recruited through purposive sampling were interviewed using the PMP-C (Simplified), which contains 20 items of everyday activities. Children rated attendance and involvement on all activities and selected three most important activities.

Results

Children with ASD selected 19 of 20 activities as the most important activity while TD children selected 17 activities. Children with ASD used all scale points for rating attendance and involvement on all activities. TD children used all scale points for rating attendance and involvement in 10 and 12 of 20 activities, respectively.

Conclusion

The contents of 20 activities of PMP-C (Simplified) were relevant for all children and especially for children with ASD for assessing participation in community, school and home activities.

Keywords:

• Attendance
• involvement
• picture-supported interview
• self-rating

Introduction

Autism spectrum disorder (ASD) is a developmental disability that can cause significant social, communication, and behavioural challenges [1]. The challenges reflect many facets of social communication skills including limited verbal skills, difficulty with social nonverbal/verbal language, as well as developing and maintaining relationships [2]. Also, repetitive and restricted behaviours, including a preference for sameness or adherence to routines, sensitivities and resistance to change, restricted interests, and/or unusual reactions to sensory stimuli are often seen in children with ASD [2]. These challenges may predispose children with ASD to participation restrictions at home, at school and in community activities [3].

Participation and participation restrictions, defined as involvement and problems with involvement in everyday activities, respectively [4,5]. By participating in everyday activities, children develop skills and capabilities; form meaningful relationships; achieve mental and physical health; express their creativity and enjoyment; develop self-identity, self-esteem, and emotional well-being; and achieve purpose and meaning in their lives [6–9]. Participation in life activities is therefore viewed as important for a child’s long-term health and well-being [10]. However, comparative previous studies revealed that children with ASD participated less frequently and with less variety in activities, compared to their TD peers [11]. The outline for the Development of Children in China (2011–2020) highlights that children with disabilities have the same rights as TD children to participate in all life situations [12]. A challenge in measuring participation in general is the ambiguity and complexity of its definition [2]. To define the concept of participation more specifically, the family of participation-related constructs (fPRC) was developed by Imms et al. [12,13]. Within the fPRC, participation is described by two essential elements: attendance and involvement. Attendance is defined as ‘being there’ in activities and can be measured as the frequency of attending an activity [14,15]. Involvement is defined as the experience of participation while attending the activity and can be measured as the level of perceived involvement [14,15]. Attendance is a necessary but not sufficient requirement for involvement, and the level of involvement reflects how participation is actually experienced in the activity [14]. The experience might include elements of involvement, motivation, persistence, social connection, and affect [14]. For example, a boy was observed to interact with his peers in the field and managed to kick a goal. The boy not only attended the soccer game, but was also involved in the game. The definitions of the two components of participation within the fPRC may help researchers and practitioners to select relevant determinants and to choose appropriate outcome measurements to answer specific research questions related to participation [12,13].

Lami et al. [16] conducted a systematic review to assess the psychometric properties of participation measurements for children with ASD including reliability, validity, and responsiveness by the Consensus-based Standards for the selection of Health Measurement Instruments (COSMIN) group. Within the systematic review, seven measures were identified to evaluate participation for children with ASD, including the School Function Assessment (SFA) [17], the Vocational Index [18], the Parent-Reported Outcomes Measurement Information System (PROMIS) Parent-proxy Peer Relationships Measure [19], Paediatric Evaluation of Disability Inventory-Computer Adaptive Test (PEDI-CAT) [20], the Children’s Assessment of Participation and Enjoyment CAPE)/Preferences for Activities of Children (PAC) [21], the Experience Sampling Method (ESM) [22] and the Adolescents and Young Adult Activity Card Sort (AYA-ACS) [23]. Four measures examined by Lami et al. [16] were proxy reports (SFA, the Vocational Index, PROMIS Parent-proxy Peer Relationships Measure, PEDI-CAT), and the other three measures were self-reports (CAPE/PAC, ESM, AYA-ACS). Three of the self-reported measures were specifically designed to focus on a specific domain to evaluate participation rather than comprehensively evaluating participation in community, school and family activities, such as domestic life (ESM, AYA-ACS) and leisure activity (CAPE/PAC) [16]. In addition, the existing participation measurements for children were developed and validated in Western high-income countries (e.g. Australia and USA) [16]. To our knowledge, there is a lack of appropriate participation assessments for children with ASD originally developed or culturally validated for the everyday contexts of the non-western cultures such as mainland China. Arvidsson et al. [24] conducted a study to compare the participation of children between South Africa (low- and middle-income country, LMIC) and Sweden (high-income country, HIC), the results indicated that the pattern of frequency of attending activities may vary with income level of country. Studies have shown that participation cannot be separated from the overall environment prerequisites, in measurement and in practice [14,15,25]. Therefore, psychometrically sound self-report instruments to assess participation in activities reflecting a variety of domains that are validated for use with children with ASD in mainland China are needed.

The United Nations Convention on the Rights of the Child (UNCRC) highlights the right of children to express their own perspectives [26], and the perspectives should be provided directly from the children, even if they have disabilities [27,28]. Studies have shown that the perspectives of children with disabilities, including cognitive impairment and communication difficulties associated with intellectual disability (ID) and ASD are often excluded as primary caregivers are viewed as proxy reporters to express their children’s perspectives [13,24,29]. One explanation is maybe that there is a shortage of appropriately meaningful and comprehensive measurements to assess participation of children with ASD from their own perspectives [16].

Picture My Participation (PMP) is a new self-rating instrument, developed by Arvidsson et al. [24], for marginalized communities and children from low socio-economic backgrounds. It aims to measure the two aspects of participation in everyday activities, namely attendance and involvement, in children and youth with disabilities [13,24,25,30,31]. PMP is intended to elicit the voice and perspective of children about their participation, helping children to provide deeper insight into their own participation experience [13,24,25,30,31]. Based on the fPRC [14,15], attendance is operationalized as how often a child attends an activity; involvement is operationalized as the extent to how involved a child feels while attending this activity. PMP contains 20 activity-items, which were derived from reviewing existing measures of participation (e.g. Participation and Environment Measure for Children and Youth, PEM-CY; CAPE) and matching items to the UNCRC and Conventions of the Rights of Persons with Disabilities (CRPD), as well as representative of the Activities and Participation chapters of the International Classification of Functioning, Disability and Health (ICF) [13,24,25,30,31]. The PMP items and response options were converted into graphic symbols and visual scales to facilitate children’s expression [13,24,25,30,31]. Picture symbols used to present each PMP activity item and the scales were selected from the Picture Communication Symbols (PCS) included in the Boardmaker™ software program by DynaVox Mayer-Johnson, LLC (Pittsburgh, PA, USA) [32]. These graphic symbols were available for free and that could be selected based on cultural preferences [24,29,31]. PMP has been translated into English and Chinese and established transcultural adaptation in Sweden, South Africa and mainland China [24,25].

Content validity can be defined as the degree to which the content of an instrument adequately reflects the construct it is assumed to measure [33,34]. The content validity of PMP was tested in both an LMIC (e.g. South Africa) and HIC (e.g. Sweden) context [24]. Arvidsson et al. investigated aspects of content validity of PMP by exploring the relevance (the items of the measure are important for the specific population and context of use) in children with and without ID[24]. The relevance were assumed to be reflected by the extent to how often (frequency counts) they chose the items as the most important activities in PmP, and the extent to which children used all the scales for rating attendance and involvement. The ratings on the attendance, involvement and perceived important activities by children with and without ID were compared to explore whether content of the PMP items is more or less relevant for children with ID [24]. In another study, PMP had been translated into a Chinese version (PMP-C, Simplified) and adapted to be culturally appropriate to the setting in mainland China [25,35]. PMP-C (Simplified) has been found to have good content validity (S-CVI/Ave = 0.98) and face validity for children with ID in mainland China [25]. However, it is not yet known whether the content of the 20 item activities of PMP-C (Simplified) are valid for children with ASD in mainland China.

The overall aim of this study was to evaluate the aspects of content validity of PMP-C (Simplified) for children with ASD and TD children in mainland China. The first specific aim was to investigate the relevance of the items, which was assumed to be reflected by the extent to which the 20 activity items were chosen as important by children. The second specific aim was to compare the responses from children with ASD and TD children regarding the importance of 20 activity items. The third specific aim was to evaluate the usefulness of the scales for attendance and involvement, which was assumed to be reflected by the extent to which children used all the scales.

Material and methods

Research design

We used a quantitative, non-experimental survey research design to investigate the responses of children with ASD and TD children regarding their perceived importance of the activities, attendance and involvement included in the PMP-C (Simplified). The ratings of importance of 20 activity items indicated the relevance of the items, and the frequency of the ratings for each point of the scales for attendance and involvement indicated the usefulness of the scales.

Settings

Data for children with ASD were collected in a rehabilitation institution, while TD children were from a kindergarten and a primary school, in a northern city with a total population of 15.57 million, in mainland China.

Participants

From November 2018 to January 2020, a sample of 63 children with ASD and 63 children with TD was recruited by convenience sampling. TD children were recruited to match the age of children with ASD. The criteria for children with ASD and TD children to be eligible for the study were as follows: (1) Children with ASD were diagnosed according to the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) [1]; (2) aged five to nine years old; (3) Chinese-speaking; (4) having expressive language that enabled them to respond to questions. Ten Questions Screen (TQS) was answered by the primary caregivers and the response on TQS confirmed if the children had a disability and if they were eligible for the study [36]. Children were able to finish three trial items from PMP-C (Simplified), and provide responses indicating that the child understood the concepts of symbols or pictures. Trial items had an expected response, e.g. Do you play with live snakes? With each item, children were asked to first consider it as a yes/no choice and then grade the frequency of attending this activity as ‘always, sometimes, seldom or never’. Children who had uncorrected visual or hearing impairments, as well as acute or long term health condition (e.g. cancer, cerebral palsy) were excluded.

Measurements

Ten Questions Screen (TQS)

Ten Questions Screen was designed to identify children with cognitive and motor impairment; seizure disorders; and serious speech, vision, and hearing impairments [36]. The TQS contained 10 closed-ended items, including five items related to cognitive development, two items related to motor development and one item each addressing vision, hearing and seizures. Each item was scored as a yes or no (yes = 1, no = 0). The total score ranges from 0 to 10 points with higher scores indicating a higher risk level of disability. A total of 0 points indicated no relation with disability and a total of 10 points indicated a high level of disability in multiple areas. The TQS has shown good test-retest reliability and interrater agreement [37].

Picture My Participation (PMP)

PMP is a 20-item instrument to assess participation of children at home, school and in community activities [24]. The first section is demographic information part, including gender, age and residence place (e.g. urban or rural). The second section contains 20 activity items regarding the frequency of attendance and involvement of perceived participation. For each activity item, the child is asked how often they take part in that specific activity on a four-point rating scale (ranging from 1= never to 4 = always), as well as how involved the child feels when attending that specific activity on a three-point rating scale (ranging from 1 = not involved to 3 = very involved). In the third section, the child is asked to select three most important activities from the 20 activity items.

Data collection

A picture-supported interview method, Talking Mats [38] was used in which PMP-C (Simplified) items and response options were converted into graphic symbols or visual scales in this study. This method has previously been reported to help individuals with communication difficulties to be actively involved in research [39]. The Talking Mats framework included using an A3 hard fibre mat with visual images along the top, representing the response category. Initially, the first author explained the ‘frequency’ mat by displaying pictures of baskets containing different numbers of apples, ‘Never = empty basket with no apples’, ‘Seldom = basket with one apple’, ‘Sometimes = basket with three apples’ and ‘Always = basket filled with apples’. The child was asked, ‘How often do you participate in this activity’ while being shown the PCS symbol of the specific activity. The child placed the PCS symbol on the mat in the column that he/she felt best represented their frequency of participation. Second, the first author showed and explained the ‘level of involvement’ mat by displaying pictures of a child with other children to describe the options for involvement, ‘Not involved = a child sitting there’, ‘Somewhat involved = a child watching other children doing activities’ and ‘Very involved = a child interacting with another child’. The child was asked to place the selected activities on the mat in the column that he/she perceived represented their level of involvement when attending this activity. After finishing rating frequency of attendance and involvement for 20 activity items, the first author explained the ‘three most important activities’ to the child according to the PMP manual. ‘Important activities’ might be important because children have to do them really often, or children really love to do them, or children really want to be able to do them. Then the child selected three picture cards from the 20 activities that represented most important activities. The child was allowed to select fewer than three activities if they wanted to. Children were encouraged to share other important activities which were not mentioned in the conversation (besides the provided 20 activities in PMP). The first author recorded the response on a separate score sheet and made notes about the additional activities as important reported by children.

Children with ASD and TD children were evaluated by the same protocol mentioned above. They were interviewed in a place deemed convenient by the participants, which for all of them meant a separate room in the rehabilitation institution, kindergarten or primary school the child attended. The interview took approximately 15–30 min.

Data analysis

Statistical analysis was performed using the SPSS 21.0 software package (Chicago, USA) [40]. Demographic characteristics (e.g. gender, age, residence place) and TQS scores were described as mean, Standard deviation (SD), median, or frequencies and proportions. The level of statistical significance was set at p < 0.05. The frequency count for each item of the PMP-C (Simplified) chosen as the ‘most important activity’ was conducted in order to present to what extent children with ASD and TD children chose any of the 20 items from PMP-C (Simplified) as the ‘most important activity’. Spearman Rank Order Correlations were conducted to compare the relationships between children with ASD and TD children regarding the items chosen as most important. The rank order of the 20 items was based on the frequencies of the items rated as the most important to participate in for children with ASD and TD children, respectively [24]. The usefulness of the scales for attendance and involvement were analysed by calculating the proportion of ratings for each point of the four-point Likert scale for each item of attendance; and for each point of the three-point Likert scale for each item of involvement.

Results

Participants and descriptive data

Altogether 70 children with ASD and 63 TD children were invited to participate in the study. Seven children with ASD declined to participate in or withdrew stating reasons such as ‘not being in the mood’ or a dislike for answering so many questions during the interview. Finally, there were equal numbers of children with ASD and TD children. More boys (n = 53) than girls (n = 10) with ASD participated in the study, which was consistent with more boys than girls being likely to receive a diagnosis of ASD [34]. There was no significant difference in terms of gender and age between children with ASD and TD children (p > 0.05). The general level of disability as rated by primary caregivers in TQS for children with ASD was higher than for TD children, as shown in Table 1.

Table 1. Descriptive data regarding gender, age, residence place and results of TQS for children with ASD (n = 63) and TD children (n = 63).

Variables		Children with ASD n (%)	TD children n (%)
Gender	Girls	10 (15.9)	17 (27.0)
	Boys	53 (84.1)	46 (73.0)
Age	5	8 (12.7)	8 (12.7)
	6	23 (36.5)	23 (36.5)
	7	27 (42.9)	27 (42.9)
	8	4 (6.3)	4 (6.3)
	9	1 (1.6)	1 (1.6)
	Mean(SD)	6.48 (0.9)	6.48 (0.9)
	Median	7	7
Residence place	Urban	58 (92.1)	63 (100.0)
	Rural	5 (7.9)	0 (0)
	Total	63 (100.0)	63 (100.0)
TQS	Min–Max	3–6	0
	Mean(SD)	4.4 (0.9)	0 (0)
	Median	4	0

Ratings of important activities

As is shown in Table 2, 19 activity items were selected as the most important by children with ASD, and 17 activity items were selected as the most important by TD children. No child chose the one item of PMP-C (Simplified) representing ‘Religion and spiritual activities’ and no typically developing child chose the items of PMP-C (Simplified) representing ‘Meal preparation’, and ‘Paid/unpaid employment’. For the selection of important activities, children were allowed to select fewer than three activities as important. Twelve children with ASD chose one activity as important, and 10 children with ASD chose two activities as important. The fact, all children with ASD chose at least one activity perceived as the most important.

Table 2. Proportion of each activity item selected as one of the three most important activities.

Activity item in PMP	Children with ASD (N = 63) n (%)	TD Children (N = 63) n (%)	Total (N = 126) n (%)
Playing with others	15 (7.9)	7 (3.7)	22 (5.8)
Shopping	14 (7.4)	6 (3.2)	20 (5.3)
Personal care	13 (6.9)	22 (11.6)	35 (9.3)
Overnight visits and trips	13 (6.9)	4 (2.1)	17 (4.5)
Family meal time	10 (5.3)	12 (6.3)	22 (5.8)
Caring for family	9 (4.8)	10 (5.3)	19 (5.0)
Caring for animals/pets	9 (4.8)	9 (4.8)	18 (4.8)
Family time	9 (4.8)	18 (9.5)	27 (7.1)
Organized leisure	9 (4.8)	10 (5.3)	19 (5.0)
Own health	8 (4.2)	12 (6.3)	20 (5.3)
Celebrations	8 (4.2)	10 (5.3)	18 (4.8)
School	8 (4.2)	34 (18.0)	42 (11.1)
Meal preparation	7 (3.7)	0	7 (1.9)
Quiet leisure	6 (3.2)	11 (5.8)	17 (4.5)
Cleaning at home	5 (2.6)	10 (5.3)	15 (4.0)
Health centre	4 (2.1)	4 (2.1)	4 (1.1)
Social activities	3 (1.6)	3 (1.6)	6 (1.6)
Paid/unpaid employment	3 (1.6)	0	3 (0.8)
Daily necessities	1 (0.5)	7 (3.7)	8 (2.1)
Religion and spiritual activities	0	0	0
Missing ratings	35 (18.5)	0	35 (8.8)
Total	189 (100.0)	189 (100.0)	398 (100.0)

The analyses from the Spearman Rank Order Correlation showed no significant correlation between the rank orders of the most important activities for children with ASD and TD children (r = 0.40, p = 0.084).

Ratings of frequency of attendance and involvement of participation

As is shown in Table 3, all four points on the scale for rating the attendance were used at least once for each of the 20 activity items by children with ASD. For TD children, all scale points were used for 10 activity items. For the remaining items, three scale points were used for six activity items, and two scale points were used for four activity items.

Table 3. Proportion of ratings, item by item, allocated to each grade of the attendance scale.

Activity item in PMP	Children with ASD					TD Children
	Always n (%)	Sometimes n (%)	Seldom n (%)	Never n (%)	Missing n (%)	Always n (%)	Sometimes n (%)	Seldom n (%)	Never n (%)	Missing n (%)
Personal care	27 (42.9)	25 (39.7)	6 (9.5)	5 (7.9)	0	54 (85.7)	9 (14.3)	0	0	0
Family mealtime	43 (68.3)	15 (23.8)	4 (6.3)	1 (1.6)	0	48 (76.2)	15 (23.8)	0	0	0
Own health	8 (12.7)	23 (36.5)	19 (30.2)	12 (19.0)	1 (1.6)	53 (84.1)	7 (11.1)	3 (4.8)	0	0
Daily necessities	5 (7.9)	15 (23.8)	18 (28.6)	25 (39.7)	0	16 (25.4)	26 (41.3)	13 (20.6)	8 (12.7)	0
Meal preparation	3 (4.8)	13 (20.6)	13 (20.6)	34 (54.0)	0	11 (17.5)	22 (34.9)	10 (15.9)	20 (31.7)	0
Cleaning at home	12 (19.0)	16 (25.4)	20 (31.7)	15 (23.8)	0	24 (38.1)	31 (49.2)	6 (9.5)	2 (3.2)	0
Caring for family	6 (9.5)	7 (11.1)	21 (33.3)	28 (44.4)	1 (1.6)	24 (38.1)	33 (52.4)	3 (4.8)	3 (4.8)	0
Caring for animals/pets	5 (7.9)	10 (15.9)	6 (9.5)	42 (66.7)	0	20 (31.7)	14 (22.2)	2 (3.2)	27 (42.9)	0
Family time	17 (27.0)	27 (42.9)	11 (17.5)	8 (12.7)	0	57 (90.5)	6 (9.5)	0	0	0
Celebrations	7 (11.1)	26 (41.3)	15 (23.8)	15 (23.8)	0	31 (49.2)	30 (47.6)	2 (3.2)	0	0
Playing with others	11 (17.5)	23 (36.5)	20 (31.7)	9 (14.3)	0	35 (55.6)	23 (36.5)	5 (7.9)	0	0
Organized leisure	6 (9.5)	20 (31.7)	19 (30.2)	18 (28.6)	0	34 (54.0)	27 (42.9)	2 (3.2)	0	0
Quiet leisure	15 (23.8)	26 (41.3)	17 (27.0)	5 (7.9)	0	27 (42.8)	34 (54.0)	2 (3.2)	0	0
Religion and spiritual activities	1 (1.6)	1 (1.6)	3 (4.8)	54 (85.7)	4 (6.3)	0	5 (7.9)	3 (4.8)	55 (87.3)	0
Shopping	22 (34.9)	26 (41.3)	10 (15.9)	5 (7.9)	0	19 (30.2)	39 (61.9)	2 (3.2)	3 (4.8)	0
Social activities	5 (7.9)	5 (7.9)	28 (44.4)	24 (38.1)	1 (1.6)	10 (15.9)	14 (22.2)	23 (36.5)	16 (25.4)	0
Health centre	3 (4.8)	29 (46.0)	27 (42.9)	4 (6.3)	0	10 (15.9)	28 (44.4)	19 (30.2)	6 (9.5)	0
School	45 (71.4)	12 (19.0)	4 (6.3)	2 (3.2)	0	60 (95.2)	3 (4.8)	0	0	0
Overnight visits and trips	1 (1.6)	18 (28.6)	28 (44.4)	16 (25.4)	0	18 (28.6)	17 (27.0)	13 (20.6)	15 (23.8)	0
Paid/unpaid employment	1 (1.6)	1 (1.6)	1 (1.6)	60 (95.2)	0	1 (1.6)	1 (1.6)	3 (4.8)	58 (92.1)	0
Total	243 (19.3)	338 (26.8)	290(23.0)	382(30.3)	7 (0.6)	552(43.8)	384 (30.1)	111 (8.9)	213(17.2)	0

As is shown in Table 4, within the group of children with ASD, each point on the involvement scale was used for all of the 20 activity items. However, all scale points were used for 12 activity items by TD children. For the remaining items, two scale points were used for seven activity items, and one scale point was used for one activity item.

Table 4. Proportion of ratings, item by item, allocated to each grade of the involvement scale.

Activity item in PMP	Children with ASD				TD children
	Very n (%)	Somewhat n (%)	Not n (%)	Missing n (%)	Very n (%)	Somewhat n (%)	Not n (%)	Missing n (%)
Personal care	30 (47.6)	28 (44.4)	5 (8.0)	0	56 (88.9)	7 (11.9)	0	0
Family meal time	47 (74.6)	13 (20.6)	3 (4.8)	0	53 (84.1)	10 (15.9)	0	0
own health	18 (28.6)	26 (41.3)	18 (28.6)	1 (1.6)	53 (84.1)	7 (11.1)	3 (4.8)	0
Daily necessities	17 (27.0)	13 (20.6)	33 (52.4)	0	50 (79.4)	5 (7.9)	8 (12.7)	0
Meal preparation	16 (25.4)	11 (17.5)	36 (57.1)	0	35 (55.6)	8 (12.7)	20 (31.7)	0
Cleaning at home	20 (31.7)	23 (36.5)	20 (31.7)	0	58 (92.1)	3 (4.8)	2 (3.1)	0
Caring for family	14 (22.2)	16 (25.4)	32 (50.8)	1 (1.6)	57 (90.5)	3 (4.8)	3 (4.8)	0
Caring for animals/pets	10 (15.9)	11 (17.5)	42 (66.7)	0	34 (54.0)	1 (1.6)	28 (44.4)	0
Family time	26 (41.3)	28 (44.4)	9 (14.3)	0	63 (100.0)	0	0	0
Celebrations	21 (33.3)	23 (36.5)	19 (30.2)	0	61 (96.8)	2 (3.2)	0	0
Playing with others	25 (39.7)	27 (42.9)	11 (17.5)	0	62 (98.4)	1 (1.6)	0	0
Organized leisure	18 (28.6)	26 (41.3)	19 (30.2)	0	61 (96.8)	1 (1.6)	1 (1.6)	0
Quiet leisure	23 (36.5)	30 (47.6)	10 (15.9)	0	57 (90.5)	6 (9.5)	0	0
Religion and spiritual activities	2 (3.2)	1 (1.6)	56 (88.9)	4 (6.3)	2 (3.2)	5 (7.9)	56 (88.9)	0
Shopping	30 (47.6)	26 (41.3)	7 (11.1)	0	59 (93.7)	2 (3.2)	2 (3.2)	0
Social activities	10 (15.9)	22 (34.9)	30 (47.6)	0	38 (60.3)	9 (14.3)	16 (25.4)	0
Health centre	20 (31.7)	31 (49.2)	12 (19.0)	0	41 (65.0)	16 (25.4)	6 (9.6)	0
School	34 (54.0)	28 (44.4)	1 (1.6)	0	62 (98.4)	1 (1.6)	0	0
Overnight visits and trips	21 (33.3)	20 (31.7)	22 (34.9)	0	44 (69.8)	4 (6.4)	15 (23.8)	0
Paid/unpaid employment	1 (1.6)	1 (1.6)	61 (96.8)	0	5 (7.9)	0	58 (92.1)	0
Total	403 (32.0)	404 (32.1)	446 (35.4)	6 (0.5)	951 (75.4)	92 (7.3)	218 (17.3)	0

Discussion

The main findings from this study indicated that the 20 activity items of the PMP-C (Simplified) and the points of the scale of attendance and involvement were more relevant for children with ASD compared to TD children. This was indicated by the extent to which the selection of important activity items and the use of all scale points for each item seemed to be higher for children with ASD than for TD children. Content validity assesses the extent to which the key concepts are relevant and comprehensible for the target population [24,25,34]. The content validity of PMP has been established for children with and without ID in LMIC and HIC context, and the items of PMP were especially relevant for children with ID in LMIC [24]. Shi et al. again found that the items in PMP-C (Simplified) had excellent content validity for children with ID in China (LMIC) [25]. Based on the method of a previous content validity study [24], the present study showed that items of PMP-C (Simplified) were relevant for all children in mainland China. These results combined signifies that PMP-C (Simplified) could be used to help children with ASD to voice their own perceptions on participation in everyday activities.

The result concerning the proportion of the items chosen as the most important in this study showed no significant rank order correlations between the ranking of the children with ASD and TD children. There were some differences related to perceived importance in activities between children with ASD and TD children. For example, when children chose each item of PMP-C (Simplified) as one of the three most important activities, the activity item that was most frequently selected by children with ASD was ‘playing with others’, while it was ‘school’ for TD children. One explanation for this may be that learning is considered more important than play in Chinese culture, and children strive to be top of the class academically or perform better than their peers due to high expectations from parents [41]. TD children chose ‘school’ as an important activity, which may indicate understanding and/or acceptance of this cultural expectation [41]. The experiences of ‘playing with others’ may possibly be different for children with ASD than for TD children. The results in the current study could indicate that ‘playing with others’ was regarded as ‘standard’ for TD children, while children with ASD may have regarded ‘playing with others’ as an activity they did not have the opportunity to do as often, and that required more of an effort. The children with ASD participating in the present study had all been enrolled in interventions where interacting with others was a primary goal, as professionals from the rehabilitation institution explained. This may also have impacted on the fact that many in this group perceived ‘playing with others’ as the most important activity.

For the selection of the three most important activities, twelve children with ASD chose one activity as important, and 10 children with ASD chose two activities as important. Children were told that they could select fewer than three activities if they wanted to. In order to explore other important activities which were not mentioned in the PMP-C (Simplified), children were asked if there was any other activity (besides the provided 20 activities) that they perceived important. However, none of the children reported additional activities as important. The fact, that all children with ASD chose at least one activity perceived as the most important indicated that they could understand the concept and how to use this section of PMP-C (Simplified), to a certain extent. This indicated they might only have fewer than three important activities. The reasons for this may be partly explained by the autism symptom of restricted, repetitive patterns of behaviours, interests, or activities [1]. Studies have shown that abnormal focus on a restricted interest may reduce the child’s willingness to attend to other activities [42,43]. However, the autism symptoms were not investigated in the current study, and the relationship between the restricted interests and participation was not a focus of this study. One possible way to further explore this could be to interview primary caregivers regarding other activities they consider important to children.

In the current study, TD children did not use the scale options/points ‘seldom and/or never’ for attendance in nine activity items and ‘somewhat and/or not’ for involvement in eight activity items. This fact may suggest that, overall, TD children have a more assured attendance and involvement in these activities compared with children with ASD. The discrepancy in the rating of frequencies regarding attendance and involvement between children with ASD and TD children revealed that there might be a difference in participation opportunities between the two groups. This is in line with previous reports showing a lower participation level in social, leisure and recreational activities [11,44–46] and less involvement in arts and crafts activities, animal care, and general cleaning for children with ASD compared with their TD peers [47]. The present study shows similar results, for example, fewer children with ASD rated ‘always’ for attendance and ‘very’ for involvement for the item ‘play with others’ compared with TD children. This result is in accordance with a previous study reporting that most children with ASD had fewer friends and spent less time with other peers than TD children [48]. The social communication difficulties of children with ASD resulting in difficulties in establishing friendly relationships [48], may be possible reasons for the less frequently attending or lower involvement in ‘play with others’ activity in the current study. However, there may be other reasons for discrepancy in ratings between the groups. Future studies should further explore children’s or their primary caregiver’s perception about specific barriers and facilitators impacting participation related to ‘play with others’.

A focus of PMP-C(Simplified) was to make sure children understand the use of the Likert scale for attendance and involvement, as social communication difficulties and cognitive problems experienced by individuals may make it difficult to express their perceptions when the content is complex or abstract [49]. To meet this challenge, all the points of the Likert scale of the attendance and involvement were converted into picture symbols. Previous PMP related studies showed the items and scales presenting with the pictures may contribute to participants’ responses in the interview [13,15,28,30]. Arvidsson et al. [24] reported that children with ID from South Africa could use all four points on the scale to describe the frequency of attendance for 20 activity items of PMP when they were provided with picture symbols presenting the Likert scales. Berg et al. reported that the use of pictures contributed to individuals’ engagement in the discussion of participation and better understanding of individuals’ participation while assessing self-reported participation through AYA-ACS [23]. The current study showed similar findings that children with ASD used all points on the scale for attendance and involvement for 20 activity items. The current study showed that children with ASD were able to complete the PMP-C (Simplified) and thereby report on their own attendance, involvement and perceived importance of activities to participate in, suggested that PMP-C (Simplified) can be a useful measurement for understanding and targeting participation outcomes. Similar findings were found in children with ID, from different countries and from both high-income and low- or middle-income countries [24,29,31].

In previous studies, proxy ratings were typically used to rate the participation of children with ASD [11]. Huus et al. [27] stated the value of giving a voice to children and allowing the children to be active participants when more complex needs were investigated. PMP-C (Simplified) offers opportunities to listen to the voices of children with ASD, which is in line with the recommendations of UNCRC, stating that children should have the right to express their own views freely [26]. First, PMP-C (Simplified) provides ratings that help quantify the frequency of participation and level of involvement perceived by children with ASD. Secondly, the unique value of the PMP-C (Simplified)as the interview process, which allows interaction with children with ASD as they are encouraged to voice their own feelings and describe their experiences. The findings showed that the PMP-C (Simplified) can be used to explore the children’s perceptions of participation from their own perspectives.

Study limitations

This study has several limitations. One limitation in this study is the small group size. Furthermore, the data was gathered in only one rehabilitation centre, kindergarten and primary school in a northern urban city of China with convenience sampling. This may have resulted in the sample not being a representative sample of children with ASD and TD children aged five to nine years old in China. The original PMP-C (Simplified) was developed for children and youths with disability aged 5 to 21 years old. Thus, our results cannot be generalized to young children less than five years old or older than nine years old. In this study PMP-C (Simplified) was used with children who could be considered to have low or medium support needs. This indicates limited generalizability of content validity evidence of the PMP-C (Simplified) to all children with ASD aged five to nine years. The design of this study did not make provision for gaining certainty about other important aspects of participation for children with ASD that may not have been covered by PMP. However, children were asked to report if they missed other important activities that they wanted to add, but they didn’t have any they wanted to add.

Conclusions

To the best of our knowledge, this is the first study to examine content validity of PMP-C (Simplified) among five to nine year-old children with and without ASD in China. The 20 activity items of the PMP-C (Simplified) are relevant for all children and especially for children with ASD. These findings offer clinicians a tool that provides a possibility to explore self-rated levels of participation of children with ASD, and to empower them to take part in decisions about their participation goals. The current study also provides evidence for the application of the Chinese version of the PMP-C (Simplified) to screen participation attendance level and involvement level, as well as to identify the most important activities.

Ethics statement

Ethical approval was obtained from the Research Ethical Committee of Tianjin Medical University (TmuhMEC2018021).

Consent form

For all participating children, the principal and the leadership of the rehabilitation institution, kindergarten and primary school provided their consent for the study. All participating children and parents were informed of the nature, purpose and procedure of the study. They were assured that participating in the study was voluntary and that they could withdraw from the study whenever they wanted without giving any reason, and that withdrawing would not impact on the service they received. All participating children were required to provide assent and their parents were asked to provide written consent before starting the data collection.

Acknowledgements

We would like to acknowledge the children who participated in this study, their parents/primary caregivers, the rehabilitation centre staff, and kindergarten and primary school staff who assisted with data collection and Tianjin Medical University for funding.

Disclosure statement

No potential conflicts of interest was reported by the author(s).

Additional information

Funding

This project was supported by the grant from the National Nature Science (No.:71974142).