Leisure, community, workforce participation and quality of life in primary and secondary caregivers of autistic children

Parents of Autistic children often modify their participation in leisure, social, and employment activities to meet the caregiving needs of their child. However, few studies have examined the impact this has on caregiver quality of life (QoL). The aim in the current study was to examine the role of participation in a range of activities on QoL amongst primary and secondary caregivers of school‐aged Autistic children. Eighty‐eight primary (93% mothers) and 63 secondary (91% fathers) caregivers of Autistic children (aged 7‐ to 12‐years) participated in this cross‐sectional study, with time pressure, participation, social support, parenting stress, and QoL measured via an online questionnaire. Compared to secondary caregivers, primary caregivers reported fewer employment hours, increased time pressure, less participation in desired activities, and higher perceived responsibility of domestic and child‐rearing tasks. Similar levels of leisure frequency, parenting stress, and QoL were identified by both caregivers. Hierarchical regression revealed caregiver participation as important for QoL in both primary and secondary caregivers. However, when measures of caregiver well‐being were added to the model, the unique contribution of participation to QoL was reduced, particularly for secondary caregivers. Overall, the findings demonstrate that despite differences in caregiver roles and responsibilities, participation in meaningful activities was important for QoL in all caregivers.


INTRODUCTION
Parents of Autistic children have described the many benefits of raising an Autistic child including developing loving bonds with their child, personal growth, and new social opportunities (Chau & Furness, 2023;Meleady et al., 2020;Potter, 2016).Although parents of all children experience some challenges in raising their children, parents of Autistic children have additional challenges in supporting their child to thrive in a world that is not designed to meet their needs (Davy et al., 2023).This has been shown to impact negatively on caregiver quality of life (QoL), a multi-dimensional concept encompassing an individual's overall health, well-being, and life satisfaction (WHOQOL Group, 1995).
Autism is characterized by differences in socialcommunication and the presence of focused or repetitive behaviors, intense interests, and differences in sensory processing (American Psychiatric Association, 2013).Higher rates of co-occurring conditions, including Intellectual Disability and Attention Deficit Hyperactivity Disorder, are also common in Autistic people (e.g., Matson & Shoemaker, 2009), which can add complexity for parents as they learn to support and parent their child.Parents of Autistic children frequently encounter increased financial and time costs associated with caregiving and supporting their child's complex needs, often resulting in heightened levels of stress and reduced QoL relative to parents of non-Autistic children (Dabrowska & Pisula, 2010;Faden et al., 2023;Hayes & Watson, 2013).As parents and parenting styles have been shown to influence child outcomes and development (Crowell et al., 2019;Greenlee et al., 2023), understanding factors that might improve parent QoL has the potential to facilitate better outcomes for both the child and broader family unit.
Past research highlights increased caregiving time and subsequent time pressure that parents of school-aged Autistic children experience, particularly mothers who are often primary caregivers (Sawyer et al., 2010).Unlike the general population where caregiving needs decrease as children enter school age, Autistic children's needs remain stable throughout childhood (Davy et al., 2023;McCann et al., 2012).Mothers of school-aged Autistic children spend an average of six and a half hours daily on caregiving (Sawyer et al., 2010), notably more than mothers of school-aged typically developing children of who average 3 hours (Smith et al., 2010).Increased time spent on caregiving tasks has been associated with heightened perceptions of time pressure (Sawyer et al., 2010).This often leads parents to reduce their engagement in employment, leisure, and community activities (Smith et al., 2010;ten Hoopen et al., 2020), making it difficult for parents of school-aged Autistic children to regularly engage in their own interests.
Occupational balance refers to the extent a person's daily activities and routines are fulfilling, purposeful, and in alignment with their values, priorities, and goals (Håkansson et al., 2006;Wagman et al., 2012).Achieving occupational balance through engaging in a variety of occupations (i.e., leisure, employment, self-care, and family activities) aligned with the individual's values has been associated with better overall health, well-being, and life satisfaction outcomes in the general population (Backman, 2004;Matuska et al., 2013).Recent research has found that parenting young children, particularly when the child has additional needs, reduces parents ability to achieve occupational balance (Dhas et al., 2023).Further, a scoping review found that reduced participation in desired activities or disruptions to occupational balance to impact negatively on subjective QoL in parents of Autistic children (Davy et al., 2022).These findings highlight the need for additional support in aiding caregivers to effectively balance time dedicated to meeting caregiving responsibilities and their own participation, leisure, and self-care needs.
To date, few studies have examined the direct influence that participation in specific occupations (i.e., leisure or employment activities) has on caregiver QoL in families of Autistic children.Research on health-promotingactivities in mothers of children with additional needs, including autism, showed that increased leisure participation was associated with improved health-related QoL (Bourke-Taylor et al., 2019;Bourke-Taylor, Pallant, et al., 2012).However, another study found higher frequency of leisure and social activity led to reduced health-related QoL in mothers of Autistic children (Rizk et al., 2011), potentially due to existing psychological or well-being factors (i.e., stress, time pressure) and poor physical health.Given caregivers limited "free time," adding activities may only serve to increase levels of fatigue and stress.Thus, additional research into participation's impact on QoL amongst caregivers of Autistic children is necessary, as such information may aid the development of appropriate supports and/or services for caregivers and their families.Further, examining this relationship alongside other known psychological predictors of caregiver QoL (i.e., time pressure, parenting stress) may provide a more comprehensive understanding of both primary and secondary caregiver outcomes.
When considering the experiences of caregivers within families of Autistic children, the literature to date appears mixed.Studies examining QoL suggest mothers of Autistic children report lower levels when compared to fathers (McStay et al., 2014); however, this is not always the case (Dardas & Ahmad, 2014;Ozgur et al., 2018).Further, studies examining time use or daily activities tend to focus only on the experience of the primary caregiver and/or mother (e.g., Bourke-Taylor, Pallant, et al., 2012;Hodgetts et al., 2014) or combine both primary and secondary caregivers in the one sample (e.g., Lam et al., 2010;Lei & Kantor, 2020).Differences are often observed between the "mother" and "father" in parenting roles and employment (Callander & Lindsay, 2018;Craig & Churchill, 2021).Combining both caregivers within the one group may then limit our understanding of the unique factors that influence parenting experiences and QoL amongst primary and secondary caregivers of Autistic children.Further, examining parenting experiences of only "mothers" and/or "fathers" does not capture the experiences of different types of caregivers (e.g., grandparents; Ji et al., 2014) or family structures (e.g., sexual and gender diversity) that exist within families of Autistic children.Thus, investigation into the participation experiences and QoL in both primary and secondary caregivers independently will provide a clearer understanding of the impact that different parenting roles and/or responsibilities may have on caregiver QoL in families of Autistic children.
The aim in the current study was twofold: first, to examine differences in leisure, community, workforce participation and QoL between primary and secondary caregivers of school-aged Autistic children; second, to examine the contribution of participation on their QoL.It was hypothesized that primary caregivers would report poorer QoL, more gaps in their daily activities, reduced frequency of leisure, reduced capacity for employment, increased stress, and added time pressure than secondary caregivers.Further, it was hypothesized that a positive relationship would be found between participation outcomes and QoL, over and above caregiver stress, amongst both primary and secondary caregivers.

METHOD Participants and procedures
The current study was part of a larger longitudinal follow up study of school-aged Autistic children and their families.Ethics Approval was obtained from the Royal Children's Hospital Melbourne and La Trobe University's Human Research Ethics Committee (HREC/55792/ RCHM-2019).Parents were recruited from three unique cohorts of children, born between 2011 and 2013, who returned for a school-age follow-up assessment.Children in Cohort 1 were diagnosed at 2-years following universal developmental monitoring for autism in a communitybased sample (see Barbaro et al., 2022).Children in Cohort 2 were also diagnosed at 2-years following clinical referral to an Early Assessment Clinic for autism at La Trobe University, which focused solely on children under 3-years.Children in the third Cohort were diagnosed later, after 3-years and before 6-years of age as a result of referral to a community-based clinic.
Families where both a primary and secondary caregiver shared parenting responsibilities were included in the current study.During the consent appointment, caregivers were asked to identify who completed the majority of caregiving responsibilities for their Autistic child/ren.The researcher then categorized caregivers who completed most of the caregiving tasks as the "primary caregiver" with the child's other caregiver as the "secondary caregiver."The final sample was comprised of 88 primary (93% mothers) and 63 secondary (91% fathers) caregivers of Autistic children aged 7-12 years.The average age of primary caregivers was 43 years, with approximately 56% holding a tertiary qualification.Secondary caregivers, on the other hand, had an average age of 45 years, with approximately 46% holding a tertiary qualification (see Table 1 for detailed characteristics of both groups).Each caregiver completed an online cross-sectional questionnaire.Sixty-one primary and secondary caregiver pairs were included in the final sample; however, families where only one caregiver responded to the questionnaires were also included.

Measures
All parents completed a demographic questionnaire which included information on parent age, ethnic background, education, employment, estimated weekly hours of household duties, and family living arrangements.Primary caregivers also provided information on family income, information on their child's diagnosis and any co-occurring conditions as well as the child's school placement.
Parental QoL was assessed via the Quality of Life in Autism Questionnaire (QoLA; Eapen et al., 2014) which is a 48-item questionnaire specifically developed for parents of Autistic children.Part A (28-items) of the QoLA measures parent-reported QoL whereas Part B (20-items) measures the impact of the child's Autistic characteristics on parent QoL.Items are rated on 5-point Likert scale from 1 (not very much) to 5 (very much) with higher scores indicating better QoL.Scores can be summed to gain a total QoL score.The QoLA has been shown to have excellent psychometric properties (α = 0.92-0.94;Eapen et al., 2014) with internal consistency within the current sample also strong (α = 0.94).
The Parenting Stress Index Short Form 4th Edition (PSI-4-SF; Abidin, 1995) is a 36-item questionnaire completed by parents of children aged 1-12 years to gauge parent perceptions of stress associated with parenting factors.Three domains are yielded from this index: parental distress, parent-child dysfunctional interactions, and difficult child.The three domains are combined to derive a total stress score which has demonstrated strong reliability for both mothers (α = 0.90) and fathers (α = 0.88) of Autistic children (Kayfitz et al., 2010).The obtained internal consistency coefficient on the total score demonstrated excellent reliability within the current study (α = 0.95).
The Occupational Gaps Questionnaire (OGQ; Eriksson, 2020) identifies incongruence between what individuals want/need to do and what they actually do in 30 sets of occupations.For each item, the participant answers "yes" or "no" for two questions: (1) "do you perform this activity now?" and (2) "do you want to perform this activity now?"For the current study, an occupational gap was considered an activity that the participant wants to perform but are currently not performing.Each activity was manually scored with 1 = occupational gap and 0 = no occupational gap.All 30 activities were then summed to create a total occupational gap score that ranged from 0 to 30.Higher scores indicate more occupational gaps.The OGQ has been shown to have acceptable validity and reliability with all adults (Eriksson, 2020) and was found to have good internal consistency within the current study (α = 0.79).
Frequency of leisure participation was measured via the Health Promoting Activity Scale (Bourke-Taylor, Law, et al., 2012) which is a brief 8-item instrument.Eight categories of leisure participation are rated on an 8-point Likert scale (1 = "never" to 8 = "once a day").Higher scores indicate higher frequency of participation in leisure activities.This measure has demonstrated acceptable reliability for use in parents of children with additional needs, including autism (Muskett et al., 2017) with internal consistency coefficients derived from the current sample also indicating good reliability (α = 0.80).
The Family Support Scale (Dunst et al., 1984) is a 19-item measure that evaluates the perceived helpfulness of formal (professional services), informal (friends), and spousal and familial support available to caregivers.Items are measured on a 6-point Likert scale (0 = "not available" to 5 = "extremely helpful"), with higher scores indicating greater perceived support.The obtained internal consistency coefficients demonstrate good reliability for the current study (α = 0.84), albeit lower than past research using this scale (α = 0.94; Hall & Graff, 2011).
Self-perceived time pressure was measured via two items taken from the Australian Bureau of Statistics Time Use Survey (Australian Bureau of Statistics, 2008).The first item required caregivers to rate their perceived level of time pressure on a 5-point Likert scale (1 = "always" to 5 = "never").Responses on this item were used as the time pressure variable with higher scores indicating less perceived time pressure.The second item required caregivers to identify why they feel rushed in a range of nine categories (e.g., "trying to balance work and family responsibilities," "unpredictable work hours").
Perceived division of household and childcare labor was assessed using two items from the Growing Up in Australia: Longitudinal Study of Australian Children (LSAC; Sanson et al., 2002) parent questionnaire.Both items required the parent to rate their perceived level of division of household and childcare labor on a 5-point Likert (1 = "I do much less than my fair share" to 5 = "I do much more than my fair share").The response for each item was then used as the variable with scores for each variable ranging from 1 to 5. Higher scores for both items indicate a higher perceived level of responsibility in household or childcare responsibilities.

Data analysis
SPSS version 28 (IBM SPSS Inc., Chicago, IL, USA) was used to generate descriptive statistics for all variables and for all analyses.For the purpose of data analysis, variables were categorized into two groups."Participation" variables included parent measures that described levels of participation in daily activities (i.e., occupational gaps, employment, household duties, perceived division of childcare and domestic tasks, and leisure frequency)."Well-being" variables included different measures of the parents' psychological state (i.e., QoL, parenting stress, perceived time pressure, and social support).Independent samples t-tests or Chi-Square tests were used to assess differences between primary and secondary caregivers (Tabachnick et al., 2013).Given the exploratory nature of these comparisons, a multiple comparisons adjustment was not applied to identify possible differences between the caregiver groups.Pearson correlations were then examined for primary and secondary caregivers separately to identify associations between caregiver QoL (dependent variable) and the well-being and participation variables.Those variables identified as having a significant association with QoL were then included in hierarchical regressions with participation variables added in the first step and well-being variables added in the second.Thus, the contribution of different aspects of caregiver participation to QoL were assessed first, followed by the contribution of participation variables amongst other known significant caregiver well-being predictors of QoL (e.g., parenting stress, social support) assessed in the second step.Two hierarchical regressions were conducted to independently examine predictors of primary and secondary caregiver QoL.
Preliminary analyses were conducted to ensure no violation of the assumptions of normality, linearity, multicollinearity, and homoscedasticity (Tabachnick et al., 2013).Necessary transformations including re-categorization were used for variables that violated normality.Untransformed variables were used in the analyses where outcomes using transformed versus untransformed variables were found to be highly similar.

Occupational gaps
For primary caregivers, the most frequent occupational gaps were hobbies (42%), participating in or taking interest in sports (e.g., working out, swimming; 35.2%), and travel (34.1%).At least 20% of primary caregivers also identified study and employment as activities they wanted to engage in but were currently unable to participate in.For secondary caregivers, the most frequent gaps were in outdoor activities (e.g., hiking, fishing; 30.2%), hobbies (25.4%), and sports, both participating in or observing (25.4%).
As the distribution in the number of occupational gaps identified by primary and secondary caregiver groups was bi-modal, this variable was categorized into two groups based on whether the caregiver identified fewer gaps (i.e., 0-2) or many occupational gaps (i.e., 3 or more).Independent samples t-tests indicated no differences between caregivers reporting fewer or many occupational gaps within both caregiver groups on child and parent demographic variables.This new occupational gaps variable was used for all further analyses.A Chi-Square test revealed primary caregivers were more likely than secondary caregivers to report three or more occupational gaps, χ 2 (1, N = 151) = 3.98, p = 0.046, φ = 0.16.

Paid and unpaid labor
Primary caregivers were employed in a casual/part-time basis (39.8%) or identified as being a "stay-at-home parent" (31.8%), whereas the majority of secondary caregivers were employed on a full-time basis (84.1%), with this difference being significant, χ 2 (3, N = 151) = 45.71,p < 0.001, φ = 0.55.Independent samples t-tests were conducted to compare the employment hours between primary and secondary caregivers, with significantly lower hours of employment per week reported by primary versus secondary caregivers (see Table 2).
T A B L E 2 Comparison of primary and secondary caregiver participation and well-being variables.

Primary caregivers
Secondary caregivers

Leisure frequency
On average, primary and secondary caregivers participated in each of the eight listed health-promoting activities "once a month" to "a few times a year."The most frequently participated activity for both primary and secondary caregivers was personal health care tasks (e.g., planning and eating healthy food, following exercise plans) which was engaged in "2-3 times a month" on average.Independent samples t-test revealed no significant differences between the frequency of participation in leisure activities in primary and secondary caregivers (see Table 2).
Well-being differences amongst caregivers

Quality of life and parenting stress
No significant differences were found in QoL between primary and secondary caregivers.However, a borderline significant difference with a small effect size was found in parenting stress with primary caregivers reported significantly higher levels of parenting stress than secondary caregivers (see Table 2).

Social support
The type of social support with the highest endorsement was "partner/spouse" with 90% of primary caregivers and 65% of secondary caregivers reporting this as "extremely helpful."This was closely followed by supports provided by "school/day-care center" and "professional helpers."The least endorsed support for both caregiver groups was that offered by "co-workers."No significant differences were found between primary and secondary caregivers in their perceived levels of social support (see Table 2).
The most frequent reason reported by both primary and secondary caregivers was difficulties associated with "trying to balance family and work responsibilities."An independent samples t-tests found primary caregivers to experience significantly more time pressure than secondary caregivers with a medium effect size (see Table 2).

Predicting primary caregiver QoL
Pearson correlation analyses were conducted to identify factors associated with QoL in primary caregivers, with the coefficients presented in Table 4. Amongst the participation variables, moderate correlations with QoL were found with occupational gaps and leisure frequency.Within the well-being variables, the correlation between QoL and parenting stress was strong, and that with social support was moderate.The significant participation variables were entered into the regression first with the caregiver variables entered at the second step (see Table 5).In the first step, each of the participation variables were identified as significant unique predictors of QoL, with the model accounting for 23% of the variance.In the second step, upon adding the well-being variables, the only significant predictors of QoL were occupational gaps, household labor hours, parenting stress, and social support, with the final model accounting for 69% of the variance.

Predicting secondary caregiver QoL
Table 6 shows results of the Pearson Correlation coefficients calculated for all predictor variables.Amongst the participation variables, significant correlations with overall QoL were found with occupational gaps (r = À0.54,p < 0.001), and frequency of leisure (r = 0.38, p < 0.001).All well-being variables were significantly correlated with overall QoL.
The participation variables were included in the first step of the regression with occupational gaps identified as the only significant predictor of overall QoL, accounting for 28% of the variance (see Table 7).In the second step, the only significant predictor of QoL was parenting stress, accounting for 48% of the variance.

DISCUSSION
The overall study aim was to examine differences in leisure, community, workforce participation, and QoL between primary and secondary caregivers of school-aged Autistic children.A secondary aim was to examine the contribution of caregiver participation to their QoL.The current findings demonstrate that although there were expected differences in the roles and responsibilities of primary and secondary caregivers, both caregivers experienced similar levels of participation in leisure activities and QoL.Further, reduced participation in meaningful activities (i.e., occupational gaps) was shown to negatively impact QoL in both primary and secondary caregivers.However, this contribution of participation to QoL was overshadowed by parenting stress, particularly for secondary caregivers where participation in desired activities was no longer associated with QoL when parenting stress was taken into account.

Differences amongst caregivers
Previously, mothers and/or primary caregivers have noted lower QoL and increased parenting stress compared to fathers and/or secondary caregivers (McStay et al., 2014;Vernhet et al., 2022;Wang et al., 2020).Nevertheless, the current findings indicate that while both primary and secondary caregivers of school-aged Autistic children experience comparable QoL, primary caregivers reported higher perceived parenting stress.Further, when compared to average levels of QoL and parenting stress in families of non-Autistic children reported in other studies using the same measures (Eapen et al., 2014;Hayes & Watson, 2013), the caregivers in the current study appear to experience poorer outcomes.This may suggest the presence of unique factors that impact QoL and parenting stress outcomes in families of Autistic children.Previously, this has been attributed to characteristics related to the Autistic child/ren (Vasilopoulou & Nisbet, 2016).However, a recent qualitative study found that parenting Autistic children was important for overall QoL (Davy et al., 2023).Parent reported lower wellbeing outcomes were attributed to inadequate support that families of Autistic children need to engage and thrive in a community that may not be attuned to diverse needs.Therefore, emphasizing environmental factors and community contexts surrounding these families could enhance outcomes for both caregivers and their children.While primary and secondary caregivers shared similarities in QoL, their roles and family responsibilities differed.As expected, the current findings indicate primary caregivers (mostly mothers) handle the majority of child-rearing and domestic duties, while secondary caregivers (mostly fathers) are usually full-time employed.This division of labor aligns with trends in the general population, where primary caregivers reduce work to manage childcare (Craig & Mullan, 2011;McCann et al., 2012).In recent times, dualincome families have grown, particularly as children start school and the primary caregiver's responsibilities reduce due to the child becoming more independent (Craig & Sawrikar, 2009).However, the findings from the current study and past literature suggest that this trend is typically not seen in families of Autistic children with mothers and/or primary caregivers continuing to participate less in the workforce compared to mothers of non-Autistic children due to the increased caregiving responsibilities (Callander & Lindsay, 2018;Davy et al., 2023).This outcome can have a negative impact on the well-being and identity of the primary caregiver (Houser et al., 2014;Stoner & Stoner, 2016) and the financial security of the wider family unit due to potentially reduced household income.Further, these findings may offer insight into the marginally significant difference observed in the current study indicating that primary caregivers reported higher perceived parenting stress compared to secondary caregivers.In terms of participation in activities outside of employment, differences were also found in the number of daily activities that caregivers felt were missing from their day-to-day life.Primary caregivers were more likely to report a higher number of occupational gaps compared to secondary caregivers, suggesting that "free-time" participation may be uniquely impacted by different parenting responsibilities.Conversely, both caregivers reported reduced capacity to occupy their time with activities relating to personal leisure and social activities.This is consistent with other studies suggesting caregivers of children with additional needs, including autism, often find it difficult to prioritize and find time for own interests and activities above that of their child's needs (Bourke-Taylor et al., 2010;Safe et al., 2012).
Unsurprisingly, primary caregivers also identified "study" and "employment" as two activities they wanted to engage in but were unable to participate in.This is consistent with other research highlighting employment as a meaningful occupation for mothers of children with additional needs, including autism (Bourke-Taylor et al., 2011;Davy et al., 2023).Obtaining a balance between committed (i.e., employment, household duties, and caregiving responsibilities) and free time (i.e., selfcare, leisure, and social) participation has been identified as important for life satisfaction and well-being in the general population (Law, 2002;Matuska, 2012;Matuska et al., 2013) and in parents of children with additional needs (Bhopti et al., 2020).Thus, supporting parents, particularly primary caregivers, to reintroduce desired activities alongside their caregiving roles and responsibilities may help to improve occupational balance and general well-being within families of Autistic children.
Leisure participation frequency was alike for primary and secondary caregivers, yet engagement in leisure activities was infrequent, averaging just two to three times per month for both groups.This indicates challenges for both caregivers in consistently pursuing self-care and health-related activities.Low levels of participation in health promoting activities appears to be common amongst mothers and fathers of children with additional needs, including autism (Bourke-Taylor et al., 2022;Bourke-Taylor, Pallant, et al., 2012) with parents associating this with their reduced health and well-being outcomes (Davy et al., 2023;McAuliffe et al., 2019).These findings demonstrate the unique influence that parenting roles and responsibilities have on caregivers within the family unit, highlighting the importance of considering both caregivers when supporting families of Autistic children.Thus, unique supports are needed to improve primary and secondary caregivers' balance of time spent meeting their caregiving responsibilities and their personal needs.

Predicting caregiver quality of life
For both primary and secondary caregivers, the frequency of leisure participation and access to desired activities played a significant role in their QoL.However, the strongest predictor of QoL was the number and range of meaningful activities parents reportedly engaged in.This finding suggests that the frequency of how often caregivers participated in leisure or self-care was not as important for QoL as simply being able to participate in a variety of activities that they identified as meaningful to their life.This notion is consistent with other research that suggests the importance of engaging in sufficient daily activities (Law, 2002;Wagman et al., 2012) with caregivers benefiting from a balance between their caregiving and personal needs while also maintaining good physical and mental health (Davy et al., 2023).Therefore, encouraging both primary and secondary caregivers to identify those activities that add value to their life and supporting them to re-engage alongside their caregiving responsibilities may help to improve caregiver QoL outcomes.
Although meaningful participation was important for caregiver QoL, the direct effect of occupational gaps on QoL was overshadowed by the unique and large contribution of parenting stress.This was particularly evident amongst secondary caregivers where occupational gaps was no longer a significant predictor of QoL when parenting stress was added to the model.Considering the caregivers already restricted available time (Safe et al., 2012;Sawyer et al., 2010), merely introducing more tasks or raising participation frequency could intensify time constraints and possible exhaustion.Moreover, if caregivers are already experiencing high levels of stress, they might lack the energy for desired activities, despite their meaningfulness.Thus, the current findings suggest that the beneficial impact of participation in meaningful activities on caregiver QoL is not a dose-response relationship and instead, requires consideration of other factors that may influence the direct relationship.While parenting stress was found to have the strongest association with QoL, it was also associated with occupational gaps and leisure frequency.Therefore, further investigation into the interrelationships and pathways amongst these variables may improve our understanding of the beneficial impact participation has on QoL outcomes amongst caregivers of Autistic children.

Potential implications
The findings from the current study demonstrate the unique influence that different caregiving roles may have on QoL outcomes in primary and secondary caregivers of Autistic children.In the broader population, there are notable distinctions in the parenting responsibilities between mothers and fathers, particularly when mothers are employed (Craig & Churchill, 2021;Craig & Sawrikar, 2009).Mothers tend to invest more time in childcare and household tasks compared to fathers, with this pattern found across diverse family structures (e.g., traditional male breadwinner, dual income) and in different countries (Craig & Mullan, 2011).The same tendencies are evident in families of Autistic children, where mothers tend to shoulder the bulk of caregiving responsibilities, regardless of their employment status (Davy et al., 2023) or whether they are single or in a coupled relationship (McAuliffe et al., 2017).These trends are believed to be influenced by prevailing gender and societal norms where mothers are often seen as the default or primary caregiver, even when both parents are employed or when other family structures are in place (Liss et al., 2013;Pedersen, 2012).These observations may shed light on why primary and secondary caregivers in the current study, who were mostly mothers and fathers respectively, may experience disparities in the way their time was allocated.Further, these trends may help to clarify why household tasks played a more significant role in influencing QoL for primary caregivers compared to secondary caregivers.Collectively, these findings underscore the necessity for achieving greater balance in parenting responsibility amongst primary and secondary caregivers of Autistic children.Taking this approach may help to alleviate some of the time pressure experienced by primary caregivers but also help to improve engagement in desired occupations and perceived QoL.
Although past literature tends to focus on the caregiving outcomes of mothers and/or primary caregiver or examines both caregivers within the one sample, our findings highlight the need for future work to consider the primary and secondary caregivers independently.Further, although the secondary caregivers in this study appeared to experience employment and caregiving responsibilities similar to fathers and/or secondary caregivers in the general population (Callander & Lindsay, 2018), they also experienced similar levels of reduced QoL compared to primary caregivers.Thus, when working with families of Autistic children to put supports in place, it is crucial to take into account the needs and well-being of both caregivers.
To improve QoL, the findings suggest that reengaging in activities aligned with the caregivers' interests may be more beneficial than just increasing the frequency of leisure or physical health related activities, particularly given the time pressures experienced by caregivers of Autistic children.Thus, clinicians' and support personnel working with families of Autistic children should help caregivers identify activities they find valuable for their own life and support them in findings ways to reintroduce participation in those activities.Further, an individualized approach that considers the relevant barriers they experience in trying to balance time meeting caregiving and personal needs is important to ensure that increasing participation in different personal activities does not add to their already high levels of stress and time pressure.

Limitations and future directions
The results from the occupational gaps measure suggest there may be subgroups of primary and secondary caregivers of Autistic children who report fewer gaps in their day-to-day activities compared to others who reported increased difficulty participating in desired activities.While past qualitative literature provides some insight into the factors that may influence parent participation in day-to-day activities (e.g., Davy et al., 2023), examining these within a larger community-based sample was outside of the scope of the current study.Thus, further investigation into the predictors of different caregiver outcomes and/or the presence of subgroups within families of Autistic children is needed as the information from such investigation could help to develop more targeted supports to improve the outcomes for both the caregiver and their Autistic child.
The findings from the current study indicate that secondary caregivers, predominantly fathers, face comparable challenges in terms of QoL and parenting stress.Despite this, they have received limited attention in the existing literature (Davy et al., 2022).Thus, future research is essential to gain insights into the parenting experiences and responsibilities of secondary caregivers and/or fathers of Autistic children and the distinctive stressors they may encounter in their parenting roles.This knowledge could pave the way for more precise supports aimed at enhancing fathers' parenting abilities and potentially rebalancing caregiving responsibilities within families of Autistic children.Furthermore, there is a need for deeper exploration of how parenting roles and responsibilities may be distributed in families of Autistic children to more comprehensively understand and capture the diverse family structures and roles that are present.
The cross-sectional design used in this study does not allow determination of the causal direction of relationships amongst the variables.Parenting responsibilities and caregiving needs for Autistic children often remain substantial and consistent throughout their developmental stages, from early childhood through adolescence and into adulthood.Thus, longitudinal investigation of the relationship between caregiver participation and QoL in families of Autistic children would help to uncover unique strengths and challenges parents encounter in their roles and responsibilities, particularly as children themselves change and develop.
All caregivers in the current study had a partner or had an additional family member who acted as the second caregiver.Prior research highlights the additional challenges faced by single parents raising children with additional needs including autism (McAuliffe et al., 2017).Further, many parents had high incomes and education which may limit the generalizability of the findings to the broader population.Thus, further investigation is needed to understand the unique influence of balancing caregiving and personal needs for single parents without the support of a second caregiver, with additional consideration for parents from diverse socioeconomic backgrounds and education levels.
Finally, the measures used in the current study could be considered overlapping (i.e., QoL and parenting stress; occupational gaps and leisure frequency), potentially limiting our ability to disentangle the unique contributions of different constructs.However, while the broader concepts may appear similar, the items within those measures are qualitatively different limiting the redundancy between the measures administered.Further, data collection for this study was completed during the COVID-19 pandemic from 2021 to 2023 within Victoria, Australia.To reduce the influence of the pandemic, data collection was paused during any extended period where stayat-home orders were enforced.However, given the increased negative impact of COVID-19 on families of Autistic children (Davy et al., 2023;Pecor et al., 2021), an impact on caregiver participation and QoL is expected, and the resulting findings may not be fully generalizable across time.

Conclusions
Overall, the findings from the current study highlight that although the roles and responsibilities amongst primary and secondary caregivers may be different, both caregivers share similar QoL experiences and report similar participation in meaningful activities and leisure time.This finding suggests the importance of considering both caregivers when supporting families of Autistic children to promote better well-being outcomes for the family unit.While access to meaningful participation was important for QoL in both caregivers, this was overshadowed by parenting stress, particularly amongst secondary caregivers.Thus, while improvements to QoL may be obtained through supporting primary and secondary caregivers to re-engage in activities that add value to their life, care must be taken to find a balance between increasing time spent meeting personal needs while also reducing the risk of increasing already high levels of caregiver related stress.
Perceived division of household and child-rearing tasks.Hierarchical regression predicting primary caregiver quality of life.
T A B L E 5Note: bold text indicates significant predictor variable.T A B L E 6 Correlation matrix for secondary caregivers (n = 63).Note: bold text indicates significance at the 0.01 level.Abbreviation: QoL, quality of life.a Well-being variable.b Participation variable.*Significant at the 0.05 level.**Significant at the 0.01 level.
T A B L E 7 Hierarchical regression predicting secondary caregiver quality of life.
Note: bold text indicates significant predictor variable.