Participation and Well-Being of Chinese Mothers Who Have Children With Disabilities

Data Collection

A cross-sectional survey was developed on Qualtrics and included demographic questions and six measures that assessed participation in health-promoting activities, mental and personal well-being, psychological distress, perceived social support, and perceived stigma. Bilingual recruitment flyers with survey links were advertised on social media platforms, carer support groups, two disability agencies, a community newspaper, and community bulletin boards between January 2021 and August 2021. The data were stored in encrypted files and would be deleted after 5 yr.

Participants

Participants were recruited by means of convenience snowball sampling. For inclusion, participants had to be self-identified ethnic Chinese mothers, with a child of any age and any type of disability, who lived in Australia, Singapore, or Taiwan. Participants who did not indicate their location or their child’s disability were excluded.

The anonymous e-survey first allowed participants to select their preferred language (English, simplified Chinese, or traditional Chinese), and then access the explanatory statement and consent form before they could begin the survey. Participants were identified only by serial numbers that were randomly generated by Qualtrics.

Measurements

All of the scales had validated measures that were used with the Chinese population, except for the Parental Perceptions of Public Attitudes Scale (PPPAS). The PPPAS was included because it was developed from a collectivist culture and also provided measures of perceived stigma that included feelings of being blamed as well as affiliate stigma.

Data Management and Analysis

The data were exported from Qualtrics to Excel and imported into IBM SPSS Statistics for Windows (Version 27). Data screening and checking were first completed with checks for outliers and data completeness. All scales were scored according to published directions. We completed a missing-value analysis, and Little’s Missing Completely at Random test indicated that values were missing at random. Data imputation using series mean yielded similar analysis results; hence, results derived from the original data were reported. Normality tests including the Shapiro-Wilks test were performed. Five of eight scales were not normally distributed; hence, we used nonparametric tests in the analyses. We tested the internal reliability of all scales using Cronbach’s coefficient α.

Correlational Analyses

Bivariate correlations (Spearman’s ρ) were calculated between the six variables with the strength of the correlation as r = .7 to .9 (strong), .4 to .6 (moderate), and .1 to .3 (weak) (Akoglu, 2018; refer to Table 2 in the Results section).

Regression Models

Four regression models were configured to identify significant predictors of frequency of participation in health-promoting activities (the HPAS), mental well-being (the WEMWS), personal well-being (the PWI), and psychological distress (the K10). Theoretical alignment, high bivariate correlations between the independent variables (>.7), high tolerance statistics (>.4), and a low variance inflation factor (<.25) were considered when we included predictors together in the models (Tabachnick et al., 2019).

Regression Model 1 included personal well-being, psychological distress, perceived support, and perceived stigma as predictors tested for frequency of participation in health-promoting activities. Regression Model 2 tested whether frequency of participation in health-promoting activities, perceived support, and perceived stigma predicted mental well-being. Regression Model 3 tested whether frequency of participation in health-promoting activities, psychological distress, perceived support, and perceived stigma significantly predicted personal well-being. Regression Model 4 had four predictors: frequency of participation in health-promoting activities, personal well-being, perceived support, and perceived stigma; and the dependent variable was psychological distress (See Tables A.1–A.4 in the Supplemental Appendix, which is available online with this article at https://research.aota.org/ajot).

Engagement in Health-Promoting Activities

Our results show that engaging in health-promoting activities predicted maternal mental well-being, which concurred with study findings that participation in health-promoting activities contributed to better maternal mental health and well-being (Bourke-Taylor et al., 2022). Harris et al. (2022) reported that mothers found routine coaching by occupational therapists helpful in achieving their health-promoting goals and engagement. The authors argued that occupational therapists are important advocates for mothers, because mothers are often not the priority in the gamut of their children’s services (Harris et al., 2022) and are mostly perceived as caregivers who “follow up” on their children. Examples of mother-focused interventions in pediatric occupational therapy practice could include facilitating Chinese mothers to set goals for healthy behaviors, engaging them in identifying meaningful and health-promoting activities, and coaching them to incorporate health-promoting occupations into their busy caregiving routines in a culturally sensitive manner (Bourke-Taylor et al., 2023).

Qualitative studies have described that Chinese mothers tend to prioritize their children over themselves (Sim et al., 2021b) and tend to neglect themselves; therefore, the focus on maternal goals could be an uncomfortable proposition as opposed to reframing their self-care goals into longer term benefits for their children. The “self-focused activities” could potentially be perceived as self-indulgent and could generate maternal guilt and blame by other family members (Sim et al. 2021b). Therefore, mothers’ beliefs in self-care occupations would need to be sensitively addressed alongside their children’s goals.

Management of Perceived Stigma

The relationship between higher perceived stigma and lower frequency of participation in health-promoting activities as well as higher psychological stress were congruent with existing literature reporting on the negative effects of stigma on maternal participation and on emotional and mental health (Ng et al., 2021; Sim et al., 2021; Yang, 2015). Sim et al. (2022) postulated that Chinese mothers tend to participate more in solo health-promoting activities over activities that involve others, which could indicate reduced opportunities to engage in communal activities or avoidance of experiences of being stigmatized. Our findings imply the importance of developing mothers’ personal strategies to stand strong in less inclusive environments and the creation of “stigma-free” environments to encourage their community participation.

Occupational therapists could facilitate opportunities for safe interaction for mothers through a variety of occupations that could address mothers’ occupational needs, such as developing meaningful roles within accepting communities and encouraging mothers to participate in self-care, leisure, or productive occupations, together with other mothers with similar experiences. Occupational therapists could also be involved in developing community programs that improve the public’s understanding of childhood disabilities and the inclusion of families who have children with disabilities, thus promoting acceptance and encouraging mothers’ and their children’s participation in social and community activities.

Enhancing Perceived Support

Our findings have established that perceived support predicted maternal participation in health-promoting activities, which is consistent with literature that suggests that Chinese mothers find a sense of belonging within support groups and perceive the group as a space for information exchange and mutual support (Lu et al., 2018). Groups could exist in a variety of formats, such as carer groups, interest groups, parent–child groups, and faith-based groups. Support groups within faith communities have received positive feedback (Tam & Poon, 2008), and online platforms have reported that social media–based parenting training has helped to reduce anxiety, depression, and stress among Chinese mothers during the global COVID-19 pandemic (Liu et al., 2021), which implies that these trainings have potential impact and appropriateness among Chinese mothers. Support groups can also be delivered through a structured mentoring network, where “senior” mothers journey with “junior” mothers. This form of peer mentoring could occur online or in person to suit individual mothers’ circumstances, with a focus on connecting mothers effectively and flexibly. Occupational therapists could be involved in training and monitoring such peer networks and in developing programs aimed at reducing isolation and improving social support.

There is evidence that the beliefs of Chinese caregivers about receiving adequate support are more important than the actual support received (Lei and Kantor, 2021a, 2021b). This suggests that creating a sense of support through shared occupations could improve the mothers’ sense of connectedness and belonging. Meaningful activities could be organized in community spaces for mothers, children, and their families, thus providing both practical support and respite for mothers. In addition, online options for group interaction opportunities could ease mothers into joining groups and could also be beneficial for those who are unable to attend the activities in person.

Perceived acceptance and support could be enhanced by improving mothers’ access to programs and choices with efforts such as providing useful caregiving information in their language and designing inclusive physical community spaces where families with children with disabilities could gather without worrying about the possible behaviors and meltdowns that might occur.

Working With Chinese Families

In this article, we report findings from our study of a sample of Chinese mothers who are culturally similar but living in three different countries. The reduced maternal engagement in health-promoting activities and in social and community participation may be closely related to their collective shame, denial, pain, and loss when they have children with disabilities (Huang et al., 2020). These beliefs could affect families’ help-seeking behaviors and perpetuate additional stress on mothers, who tend to self-blame, are blamed by others, and are most affected by affiliate stigma (Sim et al., 2021b; Yang, 2015).

Although we acknowledge the difficulty of being a part of a collective society in which individual differences are often not tolerated, we also acknowledge that families from collective cultures can also be very close knit; therefore engaging significant family members of authority could be a powerful way to improve the well-being of mothers and children. Studies on Chinese families who have children with disabilities found that higher subjective support, increased family cohesion, and family adaptability could enhance family quality of life (Lei & Kantor, 2021a, 2021b) and, thus, improve family well-being. Hence, a multiprofessional integrated family approach involving mothers, fathers, and grandparents could be effective when working with Chinese families.

Another strategy that occupational therapists could use when working with Chinese families could be to address valued family occupations as opposed to child-focused goals, because Chinese families value communal activities such as family meals, customs, and festivals. Addressing the important but disrupted family occupations and coaching relevant family members on supporting their children together, organizing important family activities, and problem solving with regard to the family’s capacity to participate in larger family gatherings are examples of culturally sensitive occupational therapy interventions.

Health Promotion and Coaching Approach

When working with children, occupational therapists can consider a health promotion approach that includes screening, monitoring (Reitz et al., 2020), and facilitating the well-being of mothers (Bourke-Taylor et al., 2023). Occupational therapists could be trained to coach Chinese mothers to incorporate health-promoting activities into their daily routines (Bourke-Taylor et al., 2023) and assist them in exploring their personal capacities to fulfill their own occupational needs (Sim et al., 2021a). Understanding the subtle cultural inclinations of the Chinese culture could assist occupational therapists in being more effective life coaches (Bourke-Taylor et al., 2023) when working with Chinese mothers and their children.