2026, Vol. 6, Issue 10, Part A

Keywords: Sibling caregiving, Autism spectrum disorder, Adult siblings, Wellbeing, Caregiving expectations, High support needs, Filipino family, Collectivist culture, Caregiving burden, Social support

Introduction

Maria, a 34-year-old office worker in Cebu City, described the moment she understood her life would be different from her peers. "When Mama got sick, everyone looked at me. Not my brother, not my cousins. Me. Because I am ate [older sister], and because Junjun [her autistic brother] needs someone always." Maria’s account, shared during a preliminary interview for this research, captures a pattern reported across dozens of Filipino families: the unspoken transfer of caregiving responsibility from aging parents to adult siblings, shaped by cultural obligation, gender roles, and the absence of formal alternatives (Tozer et al., 2016; Heller et al., 2009; Orsmond et al., 2007) ^{[1, 2, 3]}.

Autism spectrum disorder affects between 1 and 2% of children worldwide, and a substantial proportion of autistic individuals, particularly those with co-occurring intellectual disability, require lifelong support with daily living activities, medical coordination, behavioral management, and social inclusion (Taylor et al., 2012) ^[4]. As the first generation of children diagnosed under broadened diagnostic criteria reaches adulthood, the question of who will provide this support when parents can no longer do so has become increasingly pressing (Heller et al., 2009) ^[2]. In high-income countries with established disability service systems, this question is partly addressed through supported living arrangements, group homes, and professional support workers. In the Philippines and much of Southeast Asia, however, formal services for autistic adults are scarce, and the family remains the default and often sole provider of care (Marsack et al., 2017; Magaña et al., 2013) ^{[5, 6]}.

Siblings occupy a unique position in the family system. Unlike parents, who typically chose to take on caregiving when they decided to raise a child, siblings did not choose their role, and the expectations placed on them emerge gradually through family dynamics, cultural scripts, and the practical reality of parental aging (Orsmond et al., 2007; Cuskelly, 1999) ^{[3, 7]}. Research on siblings of autistic individuals has grown over the past two decades, but most of it has focused on childhood adjustment, asking whether growing up with an autistic sibling produces psychological harm or, alternatively, emotional growth (Taylor et al., 2012; Cuskelly, 1999) ^{[4, 7]}. The smaller body of work on adult siblings has tended to examine their experiences in Western, individualist cultural contexts, where the expectation to provide direct care is often weaker and where community-based services offer alternatives that reduce the caregiving load on family members (Shivers et al., 2019; Davys et al., 2016; Hodapp et al., 2010) ^{[8, 9, 10]}.

The Filipino cultural context introduces factors that are not well represented in the existing literature. The concept of utang na loob (debt of gratitude) and the strong emphasis on family solidarity mean that refusing a caregiving role is socially costly and personally distressing in ways that may not apply in more individualist societies (Marsack et al., 2017) ^[5]. The ate/kuya (older sister/brother) system creates gendered expectations about who within the sibling group will take main responsibility, and economic migration patterns often leave the sibling who stayed geographically close as the designated caregiver by default rather than choice (Tozer et al., 2016) ^[1]. These cultural forces operate alongside the practical challenges of caregiving for an autistic adult with high support needs, including physical demands, financial strain, restricted social participation, and reduced time for personal and professional development (Marsack-Topolewski, 2024; Rodriguez et al., 2024) ^{[11, 12]}.

Previous research on sibling caregiving has identified several factors that influence how siblings respond to caregiving expectations. (Marsack and Samuel) ^[5] showed that social support mediated the relationship between caregiving demands and quality of life for parents of autistic adults, but this mediating role has not been tested for siblings. Shivers and colleagues ^[8] reported that adult siblings of autistic individuals showed lower psychological wellbeing than comparison groups, while Tozer and colleagues ^[1] found that commitment to the caregiving role among UK siblings was shaped by the quality of the sibling relationship and the availability of professional support. (Heller and Kramer) ^[2] documented that involvement in future planning varied widely among siblings and was connected to both personal characteristics and family dynamics. None of these investigations has examined the specific role of perceived caregiving expectations, as different from actual caregiving behavior, as a predictor of wellbeing outcomes (Tomeny et al., 2023; Pavlopoulou et al., 2023; Nuttall et al., 2020) ^{[13, 14, 15]}.

The present research addressed three questions: (1) how perceived caregiving expectations relate to multiple dimensions of wellbeing among adult siblings of autistic individuals with high support needs in the Philippines, (2) what factors predict the level of perceived caregiving expectations, and (3) whether social support and financial resources moderate the connection between expectations and wellbeing. This research was conducted in Cebu City, the second-largest metropolitan area in the Philippines, where the combination of strong family-centered culture and limited formal disability services creates conditions that make the sibling caregiving question particularly urgent (Burke et al., 2018; Magaña et al., 2013) ^{[16, 6]}.

Theoretical framework

This research drew on two theoretical perspectives. The first was the stress-process model adapted from Pearlin and colleagues, which frames caregiving stress as a process involving primary stressors (the caregiving demands themselves), secondary stressors (the ripple effects of caregiving on other life domains), mediators (factors that buffer or amplify the stress response), and outcomes (the wellbeing consequences of the stress process) (Marsack et al., 2017; Nuttall et al., 2020) ^{[5, 15]}. In this framework, perceived caregiving expectations function as both a main and secondary stressor: the anticipation of future caregiving creates psychological burden even before the caregiving demands materialize, and the social pressure to accept the role restricts career planning, relationship formation, and geographic mobility (Marsack-Topolewski, 2024; Pavlopoulou et al., 2023) ^{[11, 14]}.

The second perspective was the Filipino family obligation framework, which recognizes that caregiving decisions in collectivist cultures are not made by individuals in isolation but are shaped by family consensus, cultural scripts, birth-order expectations, and community norms (Tozer et al., 2016; Magaña et al., 2013) ^{[1, 6]}. In this framework, the relevant unit of analysis is not the individual sibling but the family system, and the sibling’s wellbeing is connected not only to what they do but to what they are expected to do, regardless of whether those expectations are spoken or unspoken. The combination of these two frameworks guided the development of the Sibling Caregiving Expectations Scale and the path model tested in this research.

Material and methods

Material

Participants were 134 adult siblings (89 female, 45 male) of autistic individuals with high support needs, recruited from disability service organizations, parent support groups, and community health centers across the Cebu City metropolitan area between March 2022 and February 2024. To be eligible, participants had to be at least 21 years old, have a sibling with a confirmed autism diagnosis who required daily support with at least three domains of daily living (as verified by the referring organization or by caregiver report using the Vineland Adaptive Behavior Scales domain scores), and be currently involved in or anticipated to become involved in their sibling’s care. Participants ranged in age from 21 to 58 years (M = 33.4, SD = 8.7). The majority were female (66.4%), consistent with the gendered pattern of caregiving in Filipino families. By birth order, 68 participants (50.7%) were the oldest sibling in the family, 41 (30.6%) were middle siblings, and 25 (18.7%) were the youngest. The autistic siblings ranged in age from 18 to 42 years (M = 27.6, SD = 7.3), and all met criteria for high support needs defined as requiring daily assistance with personal care, safety supervision, and at least two additional life domains. Regarding current living arrangements, 96 autistic siblings (71.6%) lived with their parents and the participant sibling, 22 (16.4%) lived with the participant sibling without parents present, and 16 (11.9%) lived with parents only but with the participant sibling providing regular support.

Methods

Data were collected through structured face-to-face interviews conducted in Cebuano or Filipino, depending on the participant’s preference. The interview protocol included the Sibling Caregiving Expectations Scale (SCES), the Warwick-Edinburgh Mental Well-Being Scale (WEMWBS), the Satisfaction with Life Scale (SWLS), the Medical Outcomes Study Short Form-12 (SF-12) for physical health, a social participation measure adapted from the WHODAS 2.0, the Connor-Davidson Resilience Scale-10 (CD-RISC-10), and a financial security subscale drawn from the Personal Wellbeing Index. Caregiving hours were assessed using a structured time diary covering six caregiving task domains: personal care, medical coordination, financial management, behavioral support, social inclusion, and advocacy (Burke et al., 2018; Davys et al., 2016) ^{[16, 9]}. Social support was measured using the Multidimensional Scale of Perceived Social Support (MSPSS). All instruments were translated into Cebuano through a standard back-translation procedure, and the translated versions showed acceptable reliability (Cronbach’s α ranging from 0.78 to 0.91) in a pilot sample of 25 siblings.

Participants were classified into three groups based on SCES total scores using tercile splits: high expectations (top tercile, n = 42), moderate expectations (middle tercile, n = 54), and low expectations (bottom tercile, n = 38). Between-group differences in wellbeing measures were tested using one-way ANOVA with Bonferroni-corrected post hoc comparisons. Pearson correlations were computed for all caregiving and wellbeing variables. A path model was tested using maximum likelihood estimation in lavaan (R package) to examine the hypothesized relationships among antecedent variables, perceived caregiving expectations, and wellbeing outcomes, with social support and financial resources entered as moderators. Model fit was evaluated using the comparative fit index (CFI), root mean square error of approximation (RMSEA), and standardized root mean square residual (SRMR) (Shivers et al., 2023; Benderix et al., 2024) ^{[17, 18]}.

Instrument development

The Sibling Caregiving Expectations Scale (SCES) was developed specifically for this research because no existing instrument captured the perceived expectations dimension of sibling caregiving as different from actual caregiving behavior or general family obligation. Item generation drew on three sources: a review of the sibling caregiving literature (Tomeny et al., 2023; Taylor et al., 2012; Orsmond et al., 2007) ^{[13, 4, 3]}, a series of 12 semi-structured interviews with adult siblings of autistic individuals in Cebu City, and consultation with three Filipino disability service professionals. The initial pool of 28 items was reduced to 18 through expert review and pilot testing with 40 siblings not included in the main sample. Exploratory factor analysis of the pilot data yielded three factors: perceived family pressure (7 items, $\alpha =0.86$), anticipated caregiving scope (6 items, $\alpha =0.83$), and role acceptance (5 items, $\alpha =0.79$). The three-factor structure was confirmed using confirmatory factor analysis in the main sample (CFI = 0.93, RMSEA = 0.06, SRMR = 0.05). The total SCES score (sum of all 18 items, range 18-90) was used for group classification and path modeling, while the subscale scores were used for descriptive purposes. Test-retest reliability over a 4-week interval was r = 0.82 in a subsample of 30 participants.

Results

Siblings with high caregiving expectations reported meaningfully lower wellbeing across all measured domains compared with siblings in the low-expectations group. The overall pattern revealed a dose-response relationship: as perceived caregiving expectations increased from low to moderate to high, wellbeing scores decreased in a graded fashion, with the steepest declines observed in psychological wellbeing, social participation, and life satisfaction. The path model showed acceptable fit (CFI = 0.94, RMSEA = 0.06, SRMR = 0.05) and revealed that cultural caregiving norms, parental health decline, and the autistic sibling’s support need level were the three strongest predictors of perceived caregiving expectations, which then mediated the effects of these antecedents on wellbeing outcomes.

The extended pattern of results revealed several findings that merit closer examination. First, the dose-response relationship between expectations and wellbeing was not linear across all domains. Physical health showed a smaller gradient between the moderate and high groups (51.7 vs. 62.3) than between the low and moderate groups (62.3 vs. 68.4), suggesting that the physical health consequences of caregiving may plateau once expectations reach a certain threshold. In contrast, social participation showed the steepest decline in the high-expectations group (38.6), suggesting that the social costs of anticipated caregiving accumulate progressively as expectations intensify.

Second, the path model identified cultural caregiving norms as the single strongest predictor of perceived expectations ($\beta =0.34$), exceeding even the objective support need level of the autistic sibling ($\beta =0.31$). This finding highlights that caregiving expectations in this cultural context are not simply a rational response to the sibling’s care needs but are shaped by deeply held values about family obligation and filial duty. The moderating role of social support was consistent with the stress-buffering hypothesis: siblings who reported high levels of perceived social support showed weaker connections between expectations and wellbeing outcomes, suggesting that social networks can partially offset the negative effects of caregiving anticipation (Shivers et al., 2023; Marsack et al., 2017; Shivers et al., 2019) ^{[17, 5, 8]}.

Third, the correlation matrix (Figure 4) showed that perceived burden occupied a central position in the network of caregiving and wellbeing variables, with the strongest correlations linking it to both caregiving expectations (r = 0.71) and psychological wellbeing (r = -0.52). This pattern supports the interpretation that perceived burden functions as a mediating variable through which caregiving expectations translate into reduced wellbeing, consistent with the stress-process model framework used in this research (Nuttall et al., 2020; Magaña et al., 2013) ^{[15, 6]}. The finding that caregiving hours were more strongly connected to social participation (r = -0.42) than to psychological wellbeing (r = -0.35) suggests that the time demands of caregiving mainly affect wellbeing through the displacement of social activities and relationships, rather than through direct psychological distress (Rodriguez et al., 2024; Benderix et al., 2024; Davys et al., 2016) ^{[12, 18, 9]}.

Discussion

The main findings of this research can be summarized as follows: perceived caregiving expectations were negatively connected to all measured dimensions of wellbeing among adult siblings of autistic individuals with high support needs in the Philippines; cultural norms were the strongest predictor of these expectations; and social support moderated the expectations-wellbeing link. These findings emerged from a sample embedded in a collectivist cultural context where family caregiving is normative and where formal alternatives to family-provided care are largely unavailable.

Several findings align with the existing literature. The negative relationship between caregiving expectations and psychological wellbeing is consistent with Shivers and colleagues ^[8], who reported lower psychological wellbeing among adult siblings of autistic individuals in the United States, and with Nuttall and colleagues ^[15], who found that caregiving strain predicted reduced wellbeing among similar populations. The role of social support as a moderating variable mirrors the findings of (Marsack and Samuel) ^[5] for parents and extends their model to the sibling caregiving context. The phase model of caregiving expectations (Table 1) is consistent with Tozer and colleagues’ ^[1] observation that sibling commitment develops gradually through a process of negotiation rather than appearing suddenly at a single transition point, and with (Heller and Kramer’s) ^[2] earlier finding that sibling involvement in future planning varies by age and family circumstances.

Some findings diverge from the existing evidence base. While Hodapp and colleagues ^[10] reported that adult siblings generally adjusted well to the presence of a disabled family member, the present results suggest that this positive framing may not extend to siblings facing high caregiving expectations in resource-limited settings. The magnitude of the wellbeing differences between the high and low expectations groups (effect sizes ranging from d = 0.72 to d = 1.34 across wellbeing measures) exceeded those reported in Western samples (Tomeny et al., 2023; Pavlopoulou et al., 2023; Shivers et al., 2019) ^{[13, 14, 8]}, raising the possibility that the caregiving-wellbeing connection is stronger in cultural contexts where refusing the caregiving role carries social consequences. Similarly, while (Cuskelly) ^[7] argued that methodological issues have inflated estimates of sibling maladjustment, the present findings suggest that in collectivist settings, the issue is not whether siblings are maladjusted but whether the structural conditions of their caregiving role are adequately addressed (Taylor et al., 2012; Hodapp et al., 2010) ^{[4, 10]}.

Several explanations may account for the strength of the findings. The Filipino cultural context creates a convergence of factors that amplify caregiving expectations: strong family obligation norms, limited disability services, gender-role expectations that channel caregiving toward female siblings, and economic conditions that restrict access to paid support. These factors operate simultaneously and may interact multiplicatively rather than additively, producing effects that are larger than what any single factor would predict. The finding that cultural norms were a stronger predictor of expectations than the sibling’s actual support needs ($\beta =0.34$ vs. 0.31) suggests that the psychological weight of caregiving expectations derives more from social obligation than from the practical demands of care, a distinction that has important implications for intervention design (Burke et al., 2018; Heller et al., 2009) ^{[16, 2]}.

The broader implications of these findings extend beyond the Philippine context. As autism prevalence estimates continue to rise globally and as the first large cohorts of diagnosed autistic individuals reach adulthood, the question of lifelong support will become pressing in every country. The present findings suggest that in collectivist societies, sibling wellbeing should be treated as a policy concern rather than a private family matter, and that disability support services should include siblings in their target populations. The development of the SCES provides a tool that can be adapted for use in other cultural contexts to identify siblings who are at risk for reduced wellbeing due to caregiving expectations, enabling early intervention before the full weight of caregiving responsibilities materializes (Rodriguez et al., 2024; Pavlopoulou et al., 2023; Orsmond et al., 2007) ^{[12, 14, 3]}.

Limitations

This research has several limitations that should be considered. The cross-sectional design prevents causal conclusions about the direction of the relationship between caregiving expectations and wellbeing; it is possible that lower wellbeing leads siblings to perceive caregiving expectations as more burdensome rather than the reverse. The sample was drawn from a single Philippine city and recruited through disability service organizations, which may not represent the broader population of siblings who have no contact with formal services. The SCES was developed for this research and, while showing acceptable psychometric properties, has not yet been validated in independent samples or cross-cultural settings. The use of tercile splits to create expectation groups, while common in the caregiving literature, introduces arbitrary boundaries that may not correspond to clinically meaningful thresholds. Self-reported caregiving hours are subject to recall bias and social desirability effects, and objective measures of caregiving time (such as experience sampling) would strengthen future research. The path model, while showing adequate fit, represents one of several plausible configurations of the relationships among the measured variables, and the cross-sectional data cannot distinguish between the tested model and alternative causal orderings (Shivers et al., 2023; Benderix et al., 2024) ^{[17, 18]}.

Conclusion

The main contribution of this research is the demonstration that perceived caregiving expectations, as different from actual caregiving behavior, predict wellbeing across multiple domains among adult siblings of autistic individuals with high support needs in a collectivist cultural setting. The development and validation of the Sibling Caregiving Expectations Scale provides a measurement tool that captures the anticipatory dimension of sibling caregiving, filling a gap in the existing instrument landscape that has focused mainly on current caregiving activities rather than the expectations that shape siblings’ life trajectories.

The supporting evidence for this contribution comes from several converging findings. The radar plot of wellbeing profiles showed consistent and large differences across all six domains between the high and low expectations groups, ruling out the possibility that expectations affect only one narrow aspect of wellbeing. The path model identified a coherent chain from cultural and structural antecedents through perceived expectations to wellbeing outcomes, with social support and financial resources operating as moderating influences. The correlation matrix revealed that perceived burden occupies a central mediating position linking expectations to wellbeing outcomes, providing a specific target for intervention efforts. The caregiving hours data showed that expectations translate into concrete time commitments that reduce the hours available for personal, professional, and social pursuits.

The significance of these findings for the field extends in two directions. For sibling research, the results establish that the anticipatory dimension of caregiving, the awareness that one is expected to become a main caregiver, exerts measurable effects on wellbeing that are independent of current caregiving demands. This finding challenges the implicit assumption in much of the sibling literature that adjustment is mainly a response to the present situation rather than a response to anticipated future obligations. For disability policy in low- and middle-income countries, the findings provide evidence that family-centered care models, while culturally appropriate and practically necessary, carry psychological costs for the family members who are expected to provide that care, and that these costs are not addressed by interventions focused solely on the autistic individual.

Several open questions remain for future research. Longitudinal designs that follow siblings through the developmental phases identified in this research would clarify whether the relationship between expectations and wellbeing changes as expectations shift from anticipated to realized caregiving. The moderating role of social support warrants more detailed investigation, including the question of whether formal support services produce the same buffering effects as informal social networks. The SCES needs to be validated in other Southeast Asian cultures and in immigrant communities that maintain collectivist family structures within individualist host societies. The intersecting roles of gender, birth order, and geographic proximity in shaping caregiving expectations deserve more nuanced analysis than the present research was able to provide. Most importantly, intervention research is needed to test whether targeted programs that address sibling wellbeing alongside practical caregiving support produce better outcomes than programs that treat siblings exclusively as resources for the autistic family member.

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