1. Background
Parents of children with special health care needs (CSHCN) often face elevated stress levels and psychological distress, including depression and anxiety, compared to parents of typically developing children (1). These challenges are compounded by caregiving demands, financial pressures, and social isolation commonly associated with raising CSHCN (2, 3). A third-wave cognitive-behavioral intervention, Acceptance and Commitment Therapy (ACT), has proven efficacious in reducing psychological distress and enhancing psychological flexibility (PF) among parents of CSHCN (2, 4). The ACT’s transdiagnostic approach promotes acceptance, mindfulness, and value-based actions, enabling parents to manage caregiving challenges more effectively and cultivate adaptive parenting behavior (5).
However, parent-focused interventions utilizing the ACT approach remain scarce. Additionally, fewer than half (i.e., 42%) of the existing ACT interventions have been tailored for caregivers (6). Moreover, few interventions have been tailored for non-Western populations, particularly in Malaysia. Existing studies indicate that cultural adaptation enhances intervention efficacy (6), yet there remains a lack of ACT-based programs specifically designed for Chinese Malaysian parents of CSHCN.
The Chinese community represents the second-largest ethnic group in multicultural Malaysia, accounting for 23.2% of the 33.7 million population (7). The identity of Chinese Malaysians is shaped by a hybrid cultural influence derived from their host country (i.e., Malaysia), their ancestral homeland (i.e., China), and the broader diaspora (8). Malaysian Mandarin (huayu), commonly known as the “Chinese language” in Southeast Asia, is the second most widely spoken language in the country. It exhibits distinct regional variations from Standard Mandarin (Putonghua) spoken in China and serves as an unofficial standard language among Chinese Malaysians (9). Furthermore, the cultural identity of Chinese Malaysians has been influenced by colonization, Christian missions, as well as Malaysian educational policies (10). This unique hybrid culture exists within a pluralistic society, differing from that of greater China.
2. Objectives
Given the unique linguistic and cultural characteristics of this population, the present study aimed to evaluate the feasibility and preliminary efficacy of My-CARE (ACT for Chinese Malaysian caregivers of CSHCN), an ACT-based intervention for Chinese Malaysian caregivers, in a pilot study.
3. Methods
This study is part of a broader design and development research (DDR) initiative. The Human Research Ethics Committee (Non-Medical) of University Malaysia Sarawak approved the study [HREC(NM)/2023 (1)/38]. Written informed consent was obtained from all individual participants.
3.1. My-CARE Protocol
The My-CARE protocol was prepared in the Chinese language and included examples, concepts, methods, phrases, and activities that are familiar to the Chinese Malaysian community (11). The My-CARE protocol consisted of four in-person sessions, each lasting 1.5 hours. Each session included mindfulness activities and peer interactions because they have been proven particularly helpful for parents of CSHCN (6). The sessions also included reviews of past sessions and take-home exercises. The protocol was delivered in Malaysian Mandarin, supplemented by Bahasa Malaysia and English. Table 1 depicts the My-CARE content and examples of activities.
Table 1.Summary of My-CARE Content
| Sessions | Content | Examples |
|---|---|---|
| 1) Finding stillness [Hexaflex: Present moment, self-as-context] | Ground rules and housekeeping, brief mindfulness exercise, the story of YOU, Chinese opera, what’s inside your rooster bowl? Mindfulness in everyday life | Participants were encouraged to integrate mindfulness in their daily routines. Some parents shared that they became more aware and engaged in their spiritual practices, such as praying and reading scripture. |
| 2) Weathering thoughts and feelings [Hexaflex: Acceptance, cognitive defusion] | Brief mindfulness exercise, parenting unfiltered, Chinese finger trap, tug of war, “I notice the thought…” | Participants were given more time for small-group discussions to appeal to their collectivistic nature. For instance, during the Parenting Unfiltered activity, they discussed their challenges parenting a CSHCN. As they identified their difficult thoughts and emotions, the facilitator introduced Acceptance and Cognitive Defusion. |
| 3) Parenting your special child [Triflex: Value, committed action] | Brief mindfulness exercise, journey to the west activity and metaphor, passengers on the bus role play | Chinese folklore, Journey to the West, was used in value identification. The characters in the folklore were used as metaphors for embracing discomfort while pursuing value-driven actions. |
| 4) You matter [summary of act principles and self-compassion] | Brief mindfulness exercise, on-the-job and off-the-job self-care, self-compassion | Facilitator prepared traditional childhood snacks (e.g., peanut candies, hawthorn slices) in the mindful eating activity. Participants were guided to share their thoughts/memories, bodily sensations, and feelings. |
Abbreviation: CSHCN, children with special health care needs.
3.2. Research Design
The study is part of a multiphasic DDR initiative aimed at developing and evaluating the My-CARE protocol. In this study, a pilot study involving eight Chinese Malaysian parents of CSHCN was conducted. A pre-post within-participant design was used to assess the feasibility, acceptability, satisfaction, reliability, and preliminary efficacy of the My-CARE intervention. The data collection was completed in January 2024. Eight participants reviewed the information sheets and provided written informed consent before completing pre-intervention measurements and commencing the sessions. They received text reminders for all meetings and were reimbursed RM20 (approximately US$4.50) after completing the sessions and measurements.
The first author developed and conducted the sessions. Born and raised in Malaysia, she is a Chinese Malaysian who speaks Malaysian Mandarin, one of her dominant languages. Her familiarity with culture, references, sayings, and other community contextual factors enables her to communicate with the participants in a culturally sensitive manner. She received training in ACT prior to and during her doctoral studies.
3.3. Participants
The study recruited its participants from non-governmental organizations, private rehabilitation centers, and early intervention centers. The inclusion criteria were: (1) Parents of CSHCN aged 0 - 18 years; (2) Malaysian of Chinese ethnic origin; (3) proficiency in Mandarin Chinese; and (4) attend at least two face-to-face sessions. The study excluded parents who reported suicidal ideation, recent loss, and severe psychiatric problems.
3.4. Measures
Participants completed the following measurements before intervention (T1) and after the fourth session (T2).
3.4.1. Demographic Information
The participants provided information about themselves and their children. The findings are reported in Tables 2 and 3.
Table 2.Demographic Characteristics of Parents
| Description of Caregivers | N | % |
|---|---|---|
| Relation to the child | ||
| Mother | 6 | 75.00 |
| Father | 2 | 25.00 |
| Age | ||
| 31 - 40 | 4 | 50.00 |
| 41 - 50 | 3 | 37.50 |
| 51 - 60 | 1 | 12.50 |
| Maritalstatus | ||
| Married | 7 | 87.50 |
| Separated | 1 | 12.50 |
| Educational level | ||
| Secondary school | 3 | 37.50 |
| Undergraduate degree | 2 | 25.00 |
| Postgraduate degree | 1 | 12.50 |
| Other | 2 | 25.00 |
| Employment status | ||
| Working full-time | 6 | 75.00 |
| None | 2 | 25.00 |
| Household income (RM) | ||
| < 2,500 | 2 | 25.00 |
| 2,501 - 5,250 | 1 | 12.50 |
| 5,251 - 11,819 | 5 | 62.50 |
Table 3.Demographic Characteristics of Children
| Description of Children | N | % |
|---|---|---|
| Gender of the child with special needs | ||
| Girl | 5 | 62.50 |
| Boy | 3 | 37.50 |
| Age of the child with special needs | ||
| < 4 | 1 | 12.50 |
| 4 - 6 | 3 | 37.50 |
| 7 - 9 | 2 | 25.00 |
| 10 - 12 | 2 | 25.00 |
| Birth order of the child with special needs | ||
| 1 | 5 | 62.50 |
| 2 | 1 | 12.50 |
| 3 | 2 | 25.00 |
| Educational institution | ||
| Mainstream class | 2 | 25.00 |
| Special class | 1 | 12.50 |
| Early intervention programme | 3 | 37.50 |
| None | 1 | 12.50 |
| Other | 1 | 12.50 |
| Formal diagnosis | ||
| Yes | 7 | 87.50 |
| No | 1 | 12.50 |
| Type of child’s special needs (multiple choices allowed) | ||
| ASD | 5 | - |
| ADHD | 3 | - |
| SLD | 3 | - |
| GDD | 2 | - |
| Dyslexia | 2 | - |
| MH | 2 | - |
Abbreviations: ASD, autism spectrum disorder; SLD, speech and language delay; ADHD, attention deficit hyperactivity disorder; GDD, global developmental delay; MH, mental health issues; HI, hearing impairment; DS, down Syndrome.
3.4.2. Depression Anxiety Stress Scale-21
Depression Anxiety Stress Scale-21 (DASS-21) is an abbreviated, 21-item self-report tool used to assess anxiety, depression, and stress across varied settings (15). It uses a 4-point Likert scale ranging from 0 (strongly disagree) to 3 (strongly agree). The Chinese version of DASS-21 has been validated to have a three-factor structure (16). Its internal consistencies were 0.90 for depression, 0.84 - 0.88 for anxiety, and 0.88 - 0.90 for stress subscales (17).
3.4.3. Multidimensional Psychological Flexibility Inventory-Short Form
MPFI is a 60-item self-report inventory assessing six distinct aspects of PF and psychological inflexibility (PI) (18). The Multidimensional Psychological Flexibility Inventory-Short Form (MPFI-SF), a 24-item short form, includes two items from each subscale (18). The items are rated on a Likert scale of 1 (never true) to 6 (always true). Higher scores reflect greater levels of that dimension. The simplified Chinese version shows high internal consistency, ranging from 0.83 to 0.93 (19). Additionally, the scale demonstrates high validity, correlating well with measures of individual well-being and distress (19).
3.4.4. Parenting Stress Index-Short Form-15
PSI is a self-report tool screening parenting stress (20). The abbreviated Chinese version of Parenting Stress Index-Short Form-15 (PSI-SF-15) consists of 15 items and includes three subscales, namely, parental stress, parent-child dysfunctional interaction, and difficult child (21). The Cronbach’s alphas for each subscale range from 0.71 to 0.82 and a total α of 0.86 to 0.87. The PSI-SF-15 displays a high convergent validity with the original PSI-SF (rs ≥ 0.90). This scale meets validity criteria in external measures of parenting practices, parental emotions, and children’s corporal punishment.
3.4.5. Other Measures
3.4.5.1. Reliability
The participants completed reliability questionnaires to assess the clarity and effectiveness of session activities at the end of each session (22). Four questionnaires, totaling forty items, were prepared. They were graded on a five-point Likert scale ranging from 1 (strongly disagree) to 5 (strongly agree). Some examples include “I can identify my parenting values after the Journey to the West activity.”
3.4.5.2. Attendance Rates and Questionnaire Completion Rates
The goals were 75% average attendance and 75% completion of all measurements.
3.4.5.3. Acceptability and Satisfaction
An adapted version of the Program Acceptability Questionnaire (23) was used to evaluate the participants’ acceptance of the entire program at T2. The questionnaire contains Parts A and B. Part A evaluates the participants’ experiences with the facilitator and group members, their overall experience with the program, and its suitability for participants with a Chinese Malaysian background. Examples are “My experience with the parent group sessions was positive” and “This program was suitable for someone like me who identifies with a Chinese Malaysian background.” This was followed by Part B, which included five open-ended questions regarding potential improvements to the program, the most beneficial topics, and soliciting open feedback. Additionally, the participant's satisfaction with the program was evaluated in each session using a four-point Likert scale, with ratings of fail (0), pass (1), well done (2), and very well done (3) (24).
3.4.6. Statistical Analysis
Research data were analyzed using SPSS version 29.0. Descriptive statistics were computed to analyze the demographic variables. For data meeting the assumption of normality, a paired-samples t-test was conducted to compare T1 and T2 means. For data that did not meet normality assumptions, the non-parametric Wilcoxon Signed-Rank test for related samples was performed. The effect size for the paired-sample t-test and Wilcoxon Signed-Rank test was expressed as Hedges’ g and r, respectively.
4. Results
4.1. Demographics
4.2. Other Measures
4.2.1. Reliability
After completing the reliability questionnaires, Cronbach’s alpha (α) was calculated using SPSS version 29.0 to ascertain the reliability coefficients of the module. Table 4 presents the Cronbach’s alpha values and their 95% confidence intervals (calculated via bootstrapping with 1000 samples) for each submodule. The module achieved an average Cronbach’s alpha of .87, reflecting an acceptable level of reliability (25).
Table 4. Reliability Co-efficient of My-CARE Submodules
| Submodule | Cronbach’s Alpha | 95% CI | Interpretation | |
|---|---|---|---|---|
| Lower | Upper | |||
| Finding stillness | 0.74 | 0.55 | 0.93 | Acceptable |
| Weathering thoughts and feelings | 0.93 | 0.87 | 0.99 | Acceptable |
| Parenting your special child | 0.91 | 0.84 | 0.98 | Acceptable |
| You matter | 0.92 | 0.86 | 0.98 | Acceptable |
| Average α | 0.87 | - | - | Acceptable |
4.2.2. Attendance Rates
Attendance rates for the four sessions were 100%, 88%, 88%, and 100%, respectively. One parent was absent for the second and third sessions on separate occasions due to childcare issues. The average attendance rate of 94% exceeded the target of 75%.
4.2.3. Questionnaire Completion Rates
The participants completed seven forms in digital and pen-and-paper formats. The digital questionnaire had a 100% completion rate, and the pen-and-paper forms had a 95% completion rate, surpassing the 75% goal.
4.2.4. Satisfaction
The satisfaction scores for each session were 91.67%, 95.24%, 100%, and 100.00%, rendering an average score of 96.73%.
4.2.5. Acceptability
Participants rated the overall acceptability of the program after the T2, with an average score of 94.17%.
Qualitative observations showed that the participants remained involved and attentive throughout the four sessions. They were particularly participative in small-group discussions. In the open-ended questions of the Program Acceptability Questionnaire, the participants reported experiential activities and social support as the most helpful. Overall, the participants indicated their satisfaction with the program and the facilitator. However, many remarked on the brevity of the 1.5-hour sessions.
4.3. Preliminary Efficacy
The Shapiro-Wilk test results showed that the data followed a normal distribution (P > .05), except for PF. Additionally, skewness and kurtosis values for all variables fall within the acceptable range [± 2 for skewness and ± 7 for kurtosis; (26)]. Given the violation of normality suggested by the Shapiro-Wilk test and the presence of an outlier, the non-parametric related-samples Wilcoxon Signed-Rank test was performed for PF.
The findings from DASS-21 indicated reduced psychological distress. Notably, the T2 depression score (n = 8, M = 3.63, SD = 3.38) was significantly lower than the T1 depression score (n = 8, M = 7.25, SD = 4.40), t (7) = 3.11; P = 0.02; g = 0.98, indicating a large effect size. Additionally, PF improved, and PI decreased post-intervention. Specifically, the T2 PI score (n = 8, M = 35.63, SD = 13.29) decreased relative to the T1 score (n = 8, M = 41.50, SD = 13.42), t (7) = 1.93; P = 0.09; g = 0.61). Notably, the PI scores trended towards significance (P = 0.09). Furthermore, PSI-SF-15 findings indicated a decrease in overall parenting stress. However, no significant differences were found between the pre- and post-intervention scores. Table 5 reports this information.
| Measure | Pre-test | Post-test | t | P | Effect Size (g) |
|---|---|---|---|---|---|
| DASS-21 | |||||
| DD | 7.25 ± 4.40 | 3.63 ± 3.38 | 3.11 | 0.02 c | 0.98 |
| DA | 6.00 ± 3.30 | 5.50 ± 4.07 | 0.27 | 0.80 | 0.08 |
| DS | 9.25 ± 4.30 | 5.75 ± 4.23 | 1.64 | 0.15 | 0.51 |
| MPFI-SF | |||||
| PI | 41.50 ± 13.42 | 35.63 ± 13.29 | 1.93 | 0.09 | 0.61 |
| PSI-SF-15 | 37.13 ± 11.54 | 30.25 ± 10.63 | 1.83 | 0.11 | 0.57 |
| Z | P | Effect size (r) | |||
| MPFI-SF | |||||
| PF | 53.00 ± 5.04 | 55.13 ± 9.06 | 1.18 | 0.24 | 0.42 |
Abbreviations: DASS-21, Depression Anxiety Stress Scale-21; DD, depression domain of DASS-21; DA, anxiety domain of DASS-21; DS, stress domain of DASS-21; MPFI-SF, Multidimensional Psychological Flexibility Inventory-Short Form; PI, psychological inflexibility; PSI-SF-15, Parenting Stress Index-Short Form-15; PF, psychological flexibility.
a N = 8; g: Hedges’ correction with benchmark: 0.20 small; 0.50 medium; 0.80 large. 0.10 ≤ r < 0.30 small; 0.30 ≤ r < 0.50 medium; ≥ 0.50 large.
b Values are expressed as mean ± SD.
c P < 0.05.
5. Discussion
This study reports the preliminary efficacy results of My-CARE among Chinese Malaysian parents of CSHCN using a single-group pre-post design, assessing depression, anxiety, stress, PF, PI, and PSI. Eight participants attended four weekly 1.5-hour group sessions at a community rehabilitation center, with an average attendance of 94%, surpassing the 75% target. Questionnaire completion rates ranged from 95 to 100%. Satisfaction and acceptability scores averaged 96.73% and 94.17%, respectively. The protocol demonstrated high internal reliability (α = .87), supporting its readiness for a larger-scale controlled study (27).
Participants in this study reported reduced depression, anxiety, and stress scores following the intervention. Notably, significant differences existed in the pre- and post-intervention depression scores, with a large effect size (g = 0.98). These results are consistent with the effect sizes reported in meta-analyses that documented the effectiveness of ACT across various conditions (28). The large effects observed in depression may be attributed to cognitive defusion techniques, which assist individuals in detaching from unhelpful thoughts, and the promotion of behavioral activation through engagement in valued activities (29).
Additionally, this study observed the expected ACT mechanism changes, including increased PF and decreased PI. Notably, the reduction in PI scores approached significance (P = 0.09). This finding aligns with reductions in PI (reflected in lower scores on the Acceptance and Action Questionnaire-II) reported in several studies involving parents of children with neurodevelopmental disabilities (30) and parents of children with psychiatric issues (31). Interestingly, PF and PI demonstrated distinct outcomes, with PI showing a stronger trend towards significance (P = 0.09 vs 0.24) and a larger effect size (medium for PI and small-to-medium for PF). The findings suggest that My-CARE may differentially influence PF and PI. These findings reinforce prior studies that indicate PF and PI, while related, are distinct and can vary independently (18, 32). Future studies with larger samples and follow-ups are needed to provide a clearer understanding.
Furthermore, the overall Parenting Stress Index (PSI) decreased post-intervention, with a medium effect size (g = 0.57). Prior studies have reported that ACT-based interventions for parents lead to a reduction in parental stress (33). Given that the PSI assesses parental distress, parent-child dysfunctional interaction, and perception of difficult child domains, these findings suggest a positive shift in parental well-being and parent-child communication. This change may stem from greater consistency and responsiveness in parenting (31).
Overall, the My-CARE protocol was delivered using a flexible and process-based approach while maintaining its main content. This approach enabled the facilitator to respond sensitively to participants’ unique contexts and experiences (34). Throughout the four sessions, the facilitator alternated focus among participants’ experiences, ensuring that ACT principles were applied in a culturally responsive way that suited the local context. Participants expressed support for the approach and protocol in both quantitative and qualitative feedback. In their qualitative responses, they particularly valued the social support, activities, and number of sessions. However, based on participants’ suggestions, the session duration should be extended to 2 hours in the next study phase to enhance engagement.
This study represents a pioneering initiative in developing and evaluating a culturally sensitive ACT-based intervention tailored for Chinese Malaysian parents of CSHCN. Unlike previous pilot studies that focused solely on efficacy (34, 35), this study provides a more comprehensive evaluation, encompassing reliability, feasibility, acceptability, satisfaction, and preliminary efficacy of the My-CARE protocol. Additionally, unlike prior approaches that treated PF and PI as opposing points on a single continuum, this study conceptualized them as distinct constructs (32). This distinction was reinforced using MPFI, which separately assessed PF and PI, thereby enhancing the understanding of the differential influences of these ACT mechanisms.
Despite its strengths, this study has several limitations that warrant consideration. First, the small sample size inherent to this pilot study limits the statistical power to detect meaningful changes and reduces the generalizability of findings to the broader population of parents with CSHCN. Additionally, small samples are prone to inflated effect sizes, which may overestimate the true magnitude of observed outcomes. Second, the lack of a control group introduces potential bias, preventing causal inferences and making it difficult to rule out alternative explanations for the results. Third, the absence of follow-up assessments prevents conclusions regarding the longer-term intervention effects.
Despite these limitations, this study contributed to the growing evidence on culturally adapted ACT interventions within an underrepresented population. Moving forward, future studies should address these limitations by employing larger, randomized controlled trials with longitudinal follow-up measurements.
In this study, the researchers developed an ACT protocol specifically designed for Chinese Malaysian parents of CSHCN and examined its reliability, feasibility, satisfaction, acceptability, and preliminary efficacy. The My-CARE protocol was associated with significant improvements in depression and showed trends approaching significance for PI. This study provides preliminary evidence that ACT can benefit Chinese Malaysian parents of CSHCN when adapted to their linguistic and cultural contexts. However, replication in a larger controlled trial with follow-up measurements is necessary to further validate these findings.
