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There is limited knowledge regarding the perceived participation of children with long-term health conditions in everyday activities. Children may have perceptions that differ from those of their primary caregivers. It is unclear whether children and caregivers rate their participation in everyday situations in the same way.
We aimed to explore the level of agreement pertaining to perceived participation (attendance and involvement) and examine whether differences exist in the rank order of activities selected as the three most important between reports from children with long-term health conditions and their primary caregivers.
The simplified Chinese version of the Picture My Participation (PMP-C; Simplified) was used in an interview with children with long-term health conditions; meanwhile, their primary caregivers finished the questionnaire independently. Data were analyzed using Wilcoxon tests, weighted kappa values, and Spearman's rank order correlation.
Children with long-term health conditions reported significantly lower attendance scores for six activity items (
Differences may exist between the perceived participation of children with long-term health conditions, as reported by primary caregivers and the children themselves. The findings highlight that children with long-term health conditions exhibit unique views with respect to their perceived participation and have to be asked regarding their perceptions themselves.
Considering long-term health conditions’ chronic nature, assessing how long-term health conditions affect afflicted children's daily lives is important. Participation—a critical health-related behavior among children with long-term health conditions—has been the focus of varied recent research initiatives worldwide. According to previous research, children with long-term health conditions—compared to their healthy peers—are restricted with respect to participation in daily activities because of their lower physical fitness levels, negative side effects of the medication, increased frequency of clinical visits or hospital admissions, and less free time (
Long-term health conditions are defined as health problems lasting for more than 3 months that cannot be resolved spontaneously and require hospitalization, home healthcare, and/or extensive medical care (
Investigating a child's own perceptions of participation can provide a more comprehensive description of long-term health conditions’ impact on children's health and wellbeing. Therefore, researchers have highlighted the importance of obtaining participation assessments from the child's own perspective (
However, to obtain a more holistic view of participation among children, some researchers have underscored the need to collect information from both the child's and proxy's perspectives (typically, a trusted adult, such as the primary caregiver) as a mechanism for gaining information regarding the family as a unit. A comprehensive assessment of the participation of children with long-term health conditions is likely to include reports from both children and caregivers. According to some authors, children are considered unreliable interviewees who lack the cognitive and linguistic skills required to understand and answer questionnaires, which depend on the children's age and health conditions (
Participation is a complex and widely discussed concept (
To the best of our knowledge, due to cultural diversity, there is a lack of knowledge regarding participation in daily activities for children with long-term health conditions in China. Accurate and deep information regarding the participation of children with long-term health conditions in China would be an urgent requirement to be investigated. Additionally, less is known regarding the similarities and differences in participation experiences between children with long-term health conditions and their caregivers. Reports from South Africa (
The study employed a cross-sectional, exploratory design to elucidate the participation of children with long-term health conditions in China from their own—as well as from their caregivers’—perspectives. A convenience sample of 65 child–caregiver dyads was recruited from inpatient wards in two specialized hospitals in Tianjin. To be eligible, children had to be between 5 and 18 years of age with typical development and had a long-term health condition. Children and caregivers had to be able to read and write Chinese. Dyads were excluded if either the child or caregiver dyad presented any comorbid condition (e.g., physical or mental health challenges) other than congenital heart disease or leukemia that required treatment. Prior to data collection, an information letter was provided to potential participants. Participants were informed that they could withdraw from the study at any time without providing a reason; thereafter, an assent form was obtained from the child, and a written informed consent form was gained from the primary caregiver. The study was approved by the Research Ethics Committee of Tianjin Medical University. The data were collected between November 2018 and August 2019.
Of the 108 child–caregiver dyads, eight children were excluded owing to limited Chinese language skills, while 20 children were excluded owing to their serious health conditions, leaving 80 dyads that fulfilled the inclusion criteria. Of the 80 dyads, three children's primary caregivers did not provide consent for their children to participate, while 12 children chose not to participate. This resulted in 65 dyads. Attrition may reflect no direct benefit to families for participation or insufficient time and interest in the family for participation in this study. At the time of data collection, all 65 dyads were present and provided complete data.
A patient schedule was used to contact eligible participants. Feedback from doctors, nurses, primary caregivers, and children was important to ensure that the children were during the rehabilitation period and exhibited stable health conditions, thereby allowing them to attend this study.
The “ten questions” questionnaire (TQQ) is designed for children to detect neurological disabilities (
The Picture My Participation (PMP) is a new self-report measure that was developed to assess perceived participation with respect to attendance and involvement in children between 5 and 21 years of age, especially in LMICs. PMP has been widely used in children with ID and has been translated into several languages, including Chinese (
In the current study, two versions of the PMP-C (simplified) were used: PMP-C (simplified) for children (self-report) and PMP-C (simplified) for caregivers (proxy report).
The PMP-C (simplified) comprises the following three sections. The first section refers to demographic information; for the child, it focuses on gender, age, and type of community, while for the primary caregiver, it focuses on age, educational level, employment, relationship to the child, and number of people living in the house. Although some questions focused on the child, only the caregivers completed the demographic section. The second section includes 20 activity items of perceived participation in daily activities. For each activity item, the frequency of attendance is rated on a four-point Likert scale ranging from “1 = never” to “4 = always,” while the child's involvement in the activity during participation is rated on a three-point Likert scale ranging from “1 = not involved” to “3 = very involved.” Both children and caregivers completed the section. In the last section, participants are asked to choose three activities that they consider the most important to the child. Both the children and caregivers completed this section of the questionnaire.
Child–caregiver dyads were contacted in the inpatient wards of two hospitals. A survey pack was provided to the identified families chosen by the researcher in a sealed envelope. The survey pack contained the following items: (a) the information letter with a reply slip to indicate consent for the primary caregivers and their child, (b) TQQ, and (c) PMP-C (simplified). Primary caregivers were asked to complete all survey formats individually under the researcher's supervision and then return them to the researcher. Any question with which the caregiver experienced difficulty was explained by the researcher.
Thereafter, the researcher read the information letter to the child to obtain assent to participate in this study from the children themselves. An environment was created wherein the caregiver and child could not influence each other in the process of accomplishing the surveys or interviews. Child–caregiver dyads completed the PMP-C (simplified) separately to ensure that no data contamination occurred. The Talking Mats framework—as a strategy to facilitate responses to the PMP-C (simplified)—was used in face-to-face structured interviews between recruited child participants and the researcher (
Interviews were conducted using demographic questions. Subsequently, three trial items were introduced by the researcher to ensure the children's understanding of rating the activities’ frequency. The child participants were asked to rate their attendance by placing each of the visual images of the 20 activities in a column on the frequency mat to indicate the response that most accurately represented their participation frequency in the respective activities. Thereafter, the researcher explained a new Talking Mat, which was now related to the “involvement” of participation. Thereafter, the child participants need to rate their involvement by sorting each of the symbols representing the 20 activities according to their degree of involvement on the mat in the relevant column (column 1 = not involved and column 3 = very involved). The researcher recorded sequentially responses to attendance and involvement regarding each activity. Finally, the children need to select three activities, which are the most important to themselves with the help of picture symbols regarding the specific activities. Then, the children were asked to rank these three activities on the mat from most to least important for themselves to indicate the activities’ prioritization. The researcher encouraged the children to share their own stories to elicit their voices and perspectives regarding their perceived participation throughout the conversations. Each child participant spent approximately 20–30 min to complete the interview, depending on the child's ability to follow the ideas and respond.
Data were exported to IBM SPSS Statistics 21.0 program and analyzed. Descriptive statistics were used to summarize the demographic characteristics in terms of means, standard deviations (SDs), and frequencies. The TQQ scores were presented as the means and SDs.
Frequency scores for the two participation constructs (attendance and involvement) were calculated item by item in the activities chosen by children and primary caregivers. As scores are not in a normal distribution, the range, mean, and SD were used to summarize the rating scores. Wilcoxon tests were utilized for the values with abnormal distribution to compare the frequency scores for each activity at the item level between both cohorts.
The proportion of agreements and disagreements in the two participation constructs (attendance and involvement) were calculated in child–caregiver dyads on a four-point scale. Frequencies of attendance and involvement between children and primary caregivers were calculated by item-level weighted kappa values (Ƙ) and were presented on the four-point scale. Weighted kappa values (Ƙ) indicate different extents of the agreement, which is considered poor (<0.01), slight (0.01–0.20), fair (0.21–0.40), moderate (0.41–0.60), substantial (0.61–0.80), and nearly perfect (0.81–1.00) (
Overall, 65 children with long-term health conditions and their primary caregivers participated in this study. The participants were 24 boys and 41 girls, and the children were aged 5–18 years (M = 11.3 years, SD = 3.1). On the TQQ, the primary caregivers reported no problems related to disability in their children. The primary caregivers’ questionnaires were predominantly completed by mothers (
Sociodemographic characteristics and scores of the TQQ (
| Variable | |
|---|---|
| Gender | |
| Girls | 41 (63.1) |
| Boys | 24 (36.9) |
| Age (years, mean ± SD) | 11.3 ± 3.1 |
| Community type | |
| Urban | 27 (41.5) |
| Rural | 38 (58.5) |
| Long-term health conditions | |
| Congenital heart disease | 32 (49.2) |
| Leukemia | 33 (50.8) |
| TQQ (mean ± SD) | 0 (0) |
| Caregivers’ gender | |
| Women | 45 (69.2) |
| Men | 20 (30.8) |
| Caregivers’ age (years, mean ± SD) | 37.9 ± 7.0 |
| Relationship with the child | |
| Father | 20 (30.8) |
| Mother | 42 (64.6) |
| Grandmother | 0 (0) |
| Other | 3 (4.6) |
| Work status | |
| Employed full time | 12 (18.5) |
| Employed part-time | 8 (12.3) |
| Unemployed | 45 (69.2) |
| Caregivers’ highest educational level | |
| Grade 10 or lower | 43 (66.2) |
| Grade 12 | 13 (20.0) |
| Diploma | 2 (3.1) |
| Bachelor's degree | 7 (10.8) |
| Postgraduate degree | 0 (0) |
| Received a social grant | |
| Yes | 9 (13.8) |
| No | 56 (86.2) |
TQQ, “ten questions” questionnaire.
Complete data on the attendance component of the PMP-C (simplified) were available for all 65 dyads.
Item-by-item comparison of attendance scores between children and their primary caregivers (
| Activity item in the Chinese version of Picture My Participation (simplified) | Children ( |
Primary caregivers ( |
|||||
|---|---|---|---|---|---|---|---|
| Min–Max | Mean | SD | Min–Max | Mean | SD | ||
| Personal care | 2.00–4.00 | 3.63 | 0.72 | 2.00–4.00 | 3.78 | 0.48 | 0.097 |
| Family mealtime | 2.00–4.00 | 3.74 | 0.59 | 1.00–4.00 | 3.71 | 0.61 | 0.870 |
| My own health | 1.00–4.00 | 2.98 | 0.80 | 1.00–4.00 | 3.18 | 0.90 | 0.121 |
| Gathering supplies | 1.00–4.00 | 2.29 | 0.82 | 1.00–4.00 | 2.74 | 0.83 | 0.002 |
| Meal preparation | 1.00–4.00 | 1.92 | 0.84 | 1.00–4.00 | 2.40 | 0.90 | 0.001 |
| Cleaning at home | 1.00–4.00 | 2.71 | 0.82 | 1.00–4.00 | 2.77 | 0.81 | 0.498 |
| Caring for family | 1.00–4.00 | 2.62 | 0.95 | 1.00–4.00 | 2.92 | 0.82 | 0.028 |
| Caring for animals/pets | 1.00–4.00 | 1.88 | 1.04 | 1.00–4.00 | 1.98 | 1.08 | 0.457 |
| Family time | 1.00–4.00 | 3.23 | 0.86 | 1.00–4.00 | 3.46 | 0.71 | 0.063 |
| Celebrations | 1.00–4.00 | 2.58 | 0.92 | 1.00–4.00 | 2.92 | 0.82 | 0.019 |
| Playing with others | 1.00–4.00 | 3.03 | 0.87 | 1.00–4.00 | 3.32 | 0.79 | 0.023 |
| Organized leisure | 1.00–4.00 | 2.69 | 0.98 | 1.00–4.00 | 2.85 | 0.97 | 0.360 |
| Quiet leisure | 1.00–4.00 | 3.06 | 0.81 | 1.00–4.00 | 3.02 | 0.88 | 0.654 |
| Spiritual activities | 1.00–4.00 | 1.29 | 0.61 | 1.00–4.00 | 1.22 | 0.55 | 0.425 |
| Shopping | 1.00–4.00 | 2.63 | 0.88 | 1.00–4.00 | 2.97 | 0.77 | 0.016 |
| Social activities | 1.00–4.00 | 1.95 | 0.94 | 1.00–4.00 | 2.25 | 1.00 | 0.072 |
| Health center participation | 1.00–4.00 | 2.46 | 0.71 | 1.00–4.00 | 2.32 | 0.85 | 0.710 |
| Attending school | 2.00–4.00 | 3.78 | 0.45 | 1.00–4.00 | 3.88 | 0.38 | 0.248 |
| Trips and visits | 1.00–4.00 | 1.60 | 0.79 | 1.00–4.00 | 1.71 | 0.88 | 0.357 |
| Employment | 1.00–3.00 | 1.29 | 0.55 | 1.00–3.00 | 1.31 | 0.58 | 0.767 |
All 65 dyads responded to the PMP-C (simplified) involvement scale. The results of the comparison of involvement scores between the children and their primary caregivers are presented in
Item-by-item comparison of involvement scores between children and their primary caregivers (
| Activity item in the Chinese version of Picture My Participation (simplified) | Children ( |
Primary caregivers ( |
|||||
|---|---|---|---|---|---|---|---|
| Min–Max | Mean | SD | Min–Max | Mean | SD | ||
| Personal care | 1.00–3.00 | 2.65 | 0.57 | 1.00–4.00 | 2.71 | 0.52 | 0.425 |
| Family mealtime | 1.00–3.00 | 2.74 | 0.57 | 1.00–4.00 | 2.78 | 0.48 | 0.572 |
| My own health | 1.00–3.00 | 2.32 | 0.79 | 1.00–3.00 | 2.22 | 0.76 | 0.340 |
| Gathering supplies | 1.00–3.00 | 2.09 | 0.79 | 1.00–4.00 | 2.06 | 0.78 | 0.842 |
| Meal preparation | 1.00–3.00 | 1.86 | 0.81 | 1.00–3.00 | 1.86 | 0.81 | 0.878 |
| Cleaning at home | 1.00–3.00 | 2.23 | 0.81 | 1.00–3.00 | 1.98 | 0.76 | 0.041 |
| Caring for family | 1.00–3.00 | 2.23 | 0.77 | 1.00–3.00 | 2.15 | 0.69 | 0.581 |
| Caring for animals/pets | 1.00–3.00 | 1.66 | 0.87 | 1.00–4.00 | 1.62 | 0.88 | 0.703 |
| Family time | 1.00–3.00 | 2.63 | 0.57 | 1.00–3.00 | 2.52 | 0.69 | 0.282 |
| Celebrations | 1.00–3.00 | 2.43 | 0.75 | 1.00–4.00 | 2.32 | 0.79 | 0.379 |
| Playing with others | 1.00–3.00 | 2.52 | 0.71 | 1.00–3.00 | 2.62 | 0.65 | 0.452 |
| Organized leisure | 1.00–3.00 | 2.34 | 0.80 | 1.00–4.00 | 2.28 | 0.80 | 0.607 |
| Quiet leisure | 1.00–3.00 | 2.52 | 0.69 | 1.00–3.00 | 2.22 | 0.76 | 0.012 |
| Spiritual activities | 1.00–3.00 | 1.23 | 0.58 | 1.00–3.00 | 1.09 | 0.38 | 0.146 |
| Shopping | 1.00–3.00 | 2.29 | 0.74 | 1.00–3.00 | 2.29 | 0.74 | 0.960 |
| Social activities | 1.00–3.00 | 1.92 | 0.87 | 1.00–3.00 | 1.75 | 0.79 | 0.194 |
| Health center participation | 1.00–3.00 | 1.78 | 0.80 | 1.00–3.00 | 1.63 | 0.72 | 0.174 |
| Attending school | 1.00–3.00 | 2.75 | 0.56 | 1.00–3.00 | 2.75 | 0.53 | 0.957 |
| Trips and visits | 1.00–3.00 | 1.51 | 0.79 | 1.00–3.00 | 1.54 | 0.83 | 0.656 |
| Employment | 1.00–3.00 | 1.32 | 0.71 | 1.00–3.00 | 1.23 | 0.58 | 0.301 |
For the children's attendance of 20 items of activities, the proportion of agreement in perceptions of children and primary caregivers ranged from 29.2% to 86.2%, and that of disagreement ranged from 13.8% to 70.8%. The weighted kappa values ranged from 0.077 to 0.432 (
Proportion of agreement and disagreement of children and their primary caregivers on children's attendance of daily activities.
| Activity item in the Chinese version of Picture My Participation (simplified) | Agree (%) | Disagree (%) | Weighted kappa | 95% CI | |
|---|---|---|---|---|---|
| Personal care | 69.2 | 30.8 | 0.185 | −0.045 to 0.415 | 0.052 |
| Family mealtime | 64.6 | 35.4 | 0.067 | −0.175 to 0.309 | 0.503 |
| My own health | 40.0 | 60.0 | 0.221 | 0.055 to 0.387 | 0.010 |
| Gathering supplies | 38.5 | 61.5 | 0.145 | −0.003 to 0.293 | 0.054 |
| Meal preparation | 40.0 | 60.0 | 0.195 | 0.032 to 0.359 | 0.010 |
| Cleaning at home | 55.4 | 44.6 | 0.432 | 0.276 to 0.589 | 0.000 |
| Caring for family | 41.5 | 58.5 | 0.173 | 0.009 to 0.338 | 0.028 |
| Caring for animals/pets | 46.2 | 53.8 | 0.297 | 0.113 to 0.481 | 0.001 |
| Family time | 40.0 | 60.0 | 0.077 | −0.098 to 0.251 | 0.394 |
| Celebrations | 36.9 | 63.1 | 0.155 | −0.020 to 0.330 | 0.059 |
| Playing with others | 43.1 | 56.9 | 0.172 | 0.001 to 0.343 | 0.052 |
| Organized leisure | 44.6 | 55.4 | 0.285 | 0.109 to 0.462 | 0.001 |
| Quiet leisure | 52.3 | 47.7 | 0.400 | 0.235 to 0.564 | 0.000 |
| Spiritual activities | 69.2 | 30.8 | 0.170 | −0.020 to 0.359 | 0.087 |
| Shopping | 52.3 | 47.7 | 0.183 | −0.004 to 0.370 | 0.018 |
| Social activities | 29.2 | 70.8 | 0.079 | −0.094 to 0.252 | 0.360 |
| Health center participation | 38.5 | 61.5 | 0.109 | −0.063 to 0.281 | 0.196 |
| Attending school | 86.2 | 13.8 | 0.102 | −0.192 to 0.397 | 0.343 |
| Trips and visits | 56.9 | 43.1 | 0.360 | 0.160 to 0.559 | 0.000 |
| Employment | 70.8 | 29.2 | 0.317 | 0.083 to 0.552 | 0.003 |
*
For the children's involvement in 20 items of activities, the proportion of agreement in perceptions of children and their primary caregivers ranged from 38.5% to 78.5%, and that of disagreement ranged from 18.5% to 61.5%. The weighted kappa values ranged from 0.024 to 0.353 (
Proportion of agreement and disagreement of children and their primary caregivers on children's involvement in daily activities.
| Activity item in the Chinese version of Picture My Participation (simplified) | Agree (%) | Disagree (%) | Weighted kappa | 95% CI | |
|---|---|---|---|---|---|
| Personal care | 69.2 | 30.8 | 0.317 | 0.106 to 0.528 | 0.003 |
| Family mealtime | 69.2 | 30.8 | 0.157 | −0.059 to 0.372 | 0.120 |
| My own health | 52.3 | 47.7 | 0.309 | 0.110 to 0.508 | 0.001 |
| Gathering supplies | 46.2 | 53.8 | 0.199 | 0.005 to 0.394 | 0.032 |
| Meal preparation | 46.2 | 53.8 | 0.148 | −0.059 to 0.354 | 0.132 |
| Cleaning at home | 46.2 | 53.8 | 0.223 | 0.038 to 0.407 | 0.015 |
| Caring for family | 41.5 | 58.5 | 0.109 | −0.072 to 0.290 | 0.243 |
| Caring for animals/pets | 60.0 | 40.0 | 0.339 | 0.139 to 0.539 | 0.001 |
| Family time | 53.8 | 46.2 | 0.099 | −0.118 to 0.316 | 0.328 |
| Celebrations | 52.3 | 47.7 | 0.210 | 0.003 to 0.417 | 0.030 |
| Playing with others | 47.7 | 52.3 | −0.071 | −0.238 to 0.095 | 0.483 |
| Organized leisure | 49.2 | 50.8 | 0.193 | −0.019 to 0.404 | 0.047 |
| Quiet leisure | 46.2 | 53.8 | 0.140 | −0.040 to 0.319 | 0.125 |
| Spiritual activities | 81.5 | 18.5 | 0.024 | −0.158 to 0.205 | 0.805 |
| Shopping | 38.5 | 61.5 | 0.051 | −0.137 to 0.239 | 0.601 |
| Social activities | 43.1 | 56.9 | 0.164 | −0.038 to 0.366 | 0.094 |
| Health center participation | 49.2 | 50.8 | 0.122 | −0.070 to 0.314 | 0.203 |
| Attending school | 67.7 | 32.3 | −0.044 | −0.221 to 0.134 | 0.677 |
| Trips and visits | 61.5 | 38.5 | 0.188 | −0.040 to 0.416 | 0.083 |
| Employment | 78.5 | 21.5 | 0.353 | 0.076 to 0.631 | 0.001 |
*
All 65 dyads completed the selection of the three most important activities from the 20 items of activities.
Rank order of activities regarding frequencies of items selected as most important.
| Activity item in the Chinese version of Picture My Participation (simplified) | Children ( |
Primary caregiver ( |
All ( |
|---|---|---|---|
| (%) | (%) | (%) | |
| Personal care | 11.3 | 13.8 | 12.6 |
| Attending school | 12.8 | 10.3 | 11.5 |
| Family time | 7.2 | 12.3 | 9.7 |
| My own health | 10.3 | 7.7 | 9.0 |
| Playing with others | 7.2 | 6.1 | 6.7 |
| Cleaning at home | 5.6 | 7.2 | 6.4 |
| Family mealtime | 6.7 | 4.6 | 5.6 |
| Organized leisure | 4.1 | 7.2 | 5.6 |
| Caring for family | 5.1 | 3.1 | 4.1 |
| Quiet leisure | 5.1 | 3.1 | 4.1 |
| Trips and visits | 4.6 | 3.1 | 3.8 |
| Gathering supplies | 2.1 | 4.6 | 3.3 |
| Meal preparation | 2.6 | 4.1 | 3.3 |
| Shopping | 4.6 | 2.1 | 3.3 |
| Celebrations | 2.6 | 3.6 | 3.1 |
| Caring for animals/pets | 3.6 | 2.1 | 2.8 |
| Employment | 2.1 | 2.1 | 2.1 |
| Social activities | 1.5 | 1.5 | 1.5 |
| Health center participation | 0.5 | 1.5 | 1.0 |
| Spiritual activities | 0.5 | 0 | 0.3 |
| Total | 100.0 | 100.0 | 100.0 |
Spearman's rank order correlation analysis revealed a strong correlation between the rank orders of the most important activities for both groups (
The present study aimed to explore the level of agreement of perceived participation (attendance and involvement) and examine whether differences exist in the three activities that were selected as most important when selections made by children with long-term health conditions and their primary caregivers were compared. Based on the results from this study of Chinese children with long-term health conditions, the items on the PMP-C (simplified) provided useful information for caregivers and clinicians to understand children's participation issues.
Overall, compared with their primary caregivers, children with long-term health conditions reported significantly lower scores on attendance in the activities of gathering supplies, caring for family, caring for animals/pets, celebrations, playing with others, and shopping and higher scores on involvement in cleaning at home and quiet leisure (
Specifically, a higher proportion of disagreements was found between ratings of children with long-term health conditions and primary caregivers with respect to social and family activities. Our results indicate that children with long-term health conditions and caregivers with a higher probability disagree with respect to social activities (e.g., organized leisure) and family activities (e.g., meal preparation). This is in line with Dada et al. (
The following important question arises: Why do caregivers overestimate their children's attendance of perceived participation, compared with the children's own rating? A possible explanation for caregivers’ overestimation of their children's participation may be related to the weak influence of children's medical conditions, especially in some seemingly simple and concrete activities. Caregivers may realize how well their children have adapted to their long-term health conditions and the notion that their children should be able to do everything that healthy children can do.
Regarding the involvement of children's perceived participation, higher scores were reported by children themselves than by their caregivers for the following items: cleaning at home and quiet leisure. The children rated their involvement as higher in these two activities than their caregivers. Nevertheless, our results indicate that in most activities, children with long-term health conditions and their primary caregivers rated their overall involvement at approximately the same level. Some researchers have suggested that children are more likely to rate themselves at the highest level and express what they can do (
We also found an interesting result; overall, primary caregivers’ rank order of activities selected as the three most important was in line with the children's selection. In terms of perceived importance, children and primary caregivers selected similar activities of personal care, school, family time, and personal (my own) health as important. This finding indicates that both children and caregivers had similar expectations of activities in their lives. In this study, children with long-term health conditions presented a range of interests in all 20 activity items of the PMP-C. However, children with long-term health conditions may consider the three most important activities as activities as those that are typically likely to be done, that they like to do, or that they do frequently (
A strength of our study is that it focused on comparing children's perceived participation (self-reports by children) and proxy ratings by caregivers. Moreover, this study explored the level of two constructs of participation—attendance and involvement—that have not been previously evaluated with children's self-ratings and compared the proportion of the three most important activities wherein child and caregiver dyads agreed.
However, this study exhibits several limitations. First, due to the small sample size, the sample was not sufficiently large to demonstrate the findings’ representativeness. Second, there is limited variability in diagnoses of long-term health conditions. The diversity of diagnoses need to be explored in further studies. The third limitation is that this study did not explore the effects of personal factors (i.e., child's self-efficacy, preference) and environmental factors on participation. Future studies should concentrate on the factors that may contribute to increasing participation.
The raw data supporting the conclusions of this article will be made available by the authors. For further inquiries, contact the corresponding author.
The studies involving human participants were reviewed and approved by the Research Ethics Committee of Tianjin Medical University. Written informed consent to participate in this study was provided by the participants’ legal guardian/next of kin.
JB, MG, YZ, and KH contributed to the conceptualization and design of the project. HZ, JB, MG, and KH contributed to methodological development and analysis. HZ contributed to the writing of the original manuscript. HZ, JB, MG, YZ, and KH contributed to critical revisions of the work. All authors contributed to the article and approved the submitted version.
This work was supported by the National Nature Science Foundation of China (grant number 71974142).
The research team thanks all the participants who participated in the research. We thank the hospitals that provided assistance with recruitment. We would like to thank Editage (
The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.
The handling editor L-JK declared a past co-authorship with MG and KH.
All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.