Parental Resilience and Quality of Life in Children with Developmental Disabilities in Indonesia: The Role of Protective Factors

The severity of physical, cognitive, and social-emotional challenges in children with developmental disabilities significantly impacts their quality of life. One of the most consistent factors that play a role in the quality of life for children with a developmental disability is parental resilience. Previous research has identified several factors that influence parental resilience. However, this research is limited to Western countries. Little is known about the role of these factors in relation to parental resilience in Asian societies. The present study investigates the longitudinal associations between potential protective factors (fewer stressors, adaptive appraisal, social support, and compensating experiences) and parental resilience and quality of life in Indonesian families with children with developmental disabilities. A three-wave longitudinal design was used to test the indirect link between protective factors, family resilience, and quality of life. Wave one was composed of 497 families, out of which 224 and 209 families participated in waves two (1-year follow-up) and three (2-year follow-up), respectively. The Inventory of Family Protective Factors (IFPP), the Parenting Resilience Elements and the Quality of Life of children scales were used to assess the main concepts. The longitudinal connections between protective variables, parental resilience, and children’s quality of life were tested using cross-lagged path analysis. The results showed that all protective factors predicted parental resilience, and parental resilience predicted the quality of life of children with developmental disabilities.


Introduction
Children with a developmental disability are often faced with severe physical, cognitive, and social-emotional challenges (Kuper et al., 2014;Mulya et al., 2019;Townsend-White et al., 2012). These challenges may also impact their quality of life. One of the most important factors that contributes to the quality of life for children with a developmental disability is parental resilience (Migerode et al., 2012;Openshaw, 2011). Resilient parents are capable of adapting well to a new situation, thereby indirectly supporting their child. Also, they are better equipped to cope with stress and challenges, which benefits their relationship with their children (Gavidia-Payne et al., 2015;Harper Browne, 2014;Hess et al., 2002). This may positively impact the child's quality of life (Cappe et al., 2011;Suzuki et al., 2013).
Previous research has identified several protective factors (i.e., fewer stressors, adaptive appraisal, social support, compensating experiences) that contribute to higher levels of parental resilience. However, most of this research is cross-sectional or limited to data from children and families in Western countries. Only a few studies focus on the Asian context (Ilias et al., 2018;Zhao et al., 2021). Being a member of an interdependent culture, Asian people may experience various pressures and perceptions of children with developmental disabilities, as well as social support that may differ from Non-Asian, Western culture (Kusumastuti et al., 2014;Riany et al., 2016;Santoso et al., 2015). Therefore, in the present study, we will use unique data from Indonesia to identify which protective factors play a role in developing parental resilience and children's quality of life.
Developmental disabilities can be defined as characteristics that cause impairments in physical, cognitive, communicative, social, or motor abilities before the age of 22 that have repercussions for children's independent participation in society (Odom et al., 2007;Townsend-White et al., 2012;Wong et al., 2016). Children with developmental disabilities are more likely than children without a developmental disability to have a higher risk for developing internalising and externalising behaviour problems (Petrenko, 2013) or lower verbal and nonverbal communication skills (Kaiser et al., 2001) and to also encounter feeding and nutritional problems (Stevenson, 1995). Due to these disadvantages, children with developmental disabilities often have a lower quality of life than typical developmental children (Ncube et al., 2018).
Quality of life includes different aspects of physical well-being, material wellbeing, social well-being, development and activity, and emotional well-being (Perry & Felce, 2003;Petry et al., 2009). Physical well-being pertains to health, fitness and physical safety. Material well-being includes finance or income, quality of the living environment, privacy, possessions, meals or food, transport, neighbourhood, security, and stability or tenure. Social well-being includes personality relationships and community involvement. Community involvement refers to all the community activities and the community's level of acceptance. Development and activity were pertaining to the extent to which people possess and use skills concerning self-determination, independence, choice or control, and competency. Emotional well-being includes affect or mood, satisfaction, or fulfilment (Perry & Felce, 2003;Petry et al., 2009).
Parents of children with developmental disabilities may experience more stress and find coping with the disabilities of their child more challenging than parents of typically developing children (Gupta, 2007;Mukhtar et al., 2018;Suzuki et al., 2013). At the same time, to meet the specific needs of children with developmental disabilities, parents must use adequate resources and deliver high-quality parenting (Bekhet et al., 2012;Gavidia-Payne et al., 2015;Jones & Passey, 2004). Previous research indicated that Indonesian parents of children with developmental disabilities report that children with disabilities tend to have a poor quality of life (Asa et al., 2020;Desriyani et al., 2019;Kusumastuti et al., 2014).
Children whose parents adapt well to their situation have been found to experience a higher quality of life (Cappe et al., 2011). The adaptation process in the challenge of an adverse situation is defined as resilience (Suzuki et al., 2013). Adversity refers to situations that threaten developmental and well-being, including having a child with a developmental disability (Masten et al., 1990). Parental resilience consists of three constructs: the knowledge of the child's characteristics, the perceived social support, and the positive perception of parenting (Suzuki et al., 2013(Suzuki et al., , 2015. Previous crosssectional (Widyawati et al., 2020) and longitudinal (Widyawati et al., 2021) research has indicated that knowledge of the children's characteristics, perceived social support and positive perception of parenting as a part of parental resilience were related to the quality of life of children with developmental disabilities in Indonesia. Specifically, it was found that resilient parents in Indonesia were able to deliver positive parenting in an adverse situation which positively affected the child's quality of life (Widyawati et al., 2021). Those studies seem to converge with other research conducted in Western societies (Ellis & Nigg, 2009;Gavidia-Payne et al., 2015;Harper Browne, 2014;Raya et al., 2013;Sangawi et al., 2018).
Parents' ability to cope with adverse situations is affected by the availability of protective factors (Benzies & Mychasiuk, 2009;Gardner et al., 2008;Gavidia-Payne et al., 2015). According to Gardner et al., (2008), four protective factors may play a role. The first factor, fewer stressors, can be defined as the extent a family has had more positive experiences than problems in health, finances, family and friends, and work or school (Gardner et al., 2008). Families with fewer stressors were found to optimise their level of functioning and adaptation. As a result, they showed higher levels of resilience in dealing with adversity (Baruth & Caroll, 2002). Second, adaptive appraisal (i.e., beliefs that include high self-esteem, optimism, creativity, and resourcefulness (Gardner et al., 2008) is related to how families can view and approach adverse situations and increase the family's effort to find a solution. The third factor, social support, is a family's experience of having at least one supportive, caring, interested and trusting relationship. The availability of social support is linked to higher levels of psychological health, emotional well-being on the parents, and their ability to balance adverse life events. Finally, compensating experiences (i.e., the previous experiences of families to successfully deal with adversities; (Gardner et al., 2008)) were found to compensate for psychological resources that could reduce parents' emotional distress.
Previous studies conducted in Western societies concluded that some factors (i.e., positive reframing, cognitive appraisal, and social support) contributed to parental resilience to accommodate their children's needs and increase their quality of life (Murray, 2003;Singer et al., 2017). Nonetheless, these findings are based on data from Western families. The Asian culture is distinct from Western culture for various reasons and in several domains (Ilias et al., 2018;Zhao et al., 2021). For instance, it has been suggested that parental resilience and its corresponding protective factors are largely influenced by the social-ecological context and culture (Riley & Masten, 2005;Ungar, 2006;Waller, 2001). To fully understand which protective factors play a role in parental resilience, it is thus highly important to appreciate the cultural place, shared beliefs, practices, values and physical setting in which the child is being raised (Weisner 1993).
In Indonesia, children with developmental disabilities prevalence is around 3.6-4% (Anak, 2019). These children face disadvantages in education, accessibility to public services, health services, infrastructure, rehabilitation services, and mobility restriction, as well as negative attitudes from others (i.e., stigma), and bullying (Cameron & Suarez, 2017;Kusumastuti et al., 2014;Riany et al., 2016). Previous studies have found that social support in Indonesia is limited (Kusumastuti et al., 2014;Santoso et al., 2015). Studies have also shown that the stressors in interdependence cultures, among which Indonesia, are different as they are more likely to be characterised by a strong connection between generations. For instance, more than in Western cultures, parents in Indonesia have a close bond with their extended family, such as grandparents, who often have a different perception from parents of children with disabilities (Riany et al., 2017;Santoso et al., 2015). The acceptance process as one of the adaptive appraisals could also be unique in Indonesian, specifically in the Javanese family. For instance, Javanese families are more likely to believe that having a child with a disability is their destiny (Daulay, 2018;Murtisari, 2013;Widyawati et al., 2021).
Previous research also shows that other demographic aspects may affect parents in their relationship and parenting their children. Demographic aspects include children's age and gender (Azad et al., 2014;Dyches et al., 2004;Harrison & Sofronoff, 2002). Parents have greater obligations as their child gets older, including career adjustment, stigma, worries about their child's future and financial demands (Rajan et al., 2016).

The Present Study
The present study aimed to investigate the longitudinal association between protective factors, parental resilience, and quality of life in Indonesian families' sample of children with developmental disabilities. Previous studies have investigated those variables separately and focused on the association between protective factors and resilience or between resilience and quality of life. Moreover, those previous studies have focussed on another life context in Western culture and parents without children with developmental disabilities. For instance, the study conducted by McCubbin (2001) and Walsh (2003) investigated resilience and protective factors in the context of families in general without children with developmental disabilities. Those studies do not generalise to parents with children with developmental disabilities or parents in the Indonesian context. It is important to gain more insight into whether and which protective factors affect parental resilience and indirectly affect the quality of life of children with disabilities in the Indonesian context. The present study hypothesises that protective factors are associated with parental resilience, which in turn associates with higher levels of quality of life (see Fig. 1).

Participants
Participants were recruited from inclusive schools, special schools for disabled children, therapy centres or personal referrals. This study included families with at least one child diagnosed with a developmental disability. Questionnaires were sent to 822 families. A total of 322 invitees did not return the questionnaires, whereas 500 families returned them and signed written informed consent, resulting in a participation rate of 61%. Families with children older than 22 years were excluded from the analyses. The study was conducted in three waves; wave one was composed of 497 families, out of which 224 and 209 families participated in waves two (1-year followup) and three (2-year follow-up), respectively. The first wave was the initial contact with 497 families (time 1). A follow-up study of all families from the first wave was initiated one year after (time 2). For the third wave, the families were asked to participate one year after the second contact (time 3).
The main explanation for the missing data had nothing to do with the study's topic. It was prompted by a failure to find the research unit, make contact, and gain cooperation. Specifically, 29% (n = 82) of the children were diagnosed with autism spectrum disorder, 27% (n = 77) with intellectual disability, 8% (n = 22) with ADHD (Attention Deficit Hyperactivity Disorder); 8% (n = 23) with Down's syndrome and 22% (n = 64) with learning disability, speech/ hearing disorder and physical and visual impairments. The parents of 6% (n = 16) of children did not disclose their children's diagnoses. Unfortunately, the researchers were unable to obtain information regarding the degree of the children's disabilities. The average levels of education of the parents were between senior high school and undergraduate, whereas average family incomes were under the regional minimum wage (Indonesian Central Agency on Statistics). The average educational and income levels suggested an over-representation of families with a relatively low socioeconomic status.

Family Protective Factors
The Inventory of Family Protective Factors (IFPP) was used to measure protective factors. The scale developed by Gardner et al., (2008) consists of 15 items, which were grouped into four subscales with satisfactory reliability coefficients for each subscale: fewer stressors (3 items; e.g., "There have been more positive experiences than problems with work/school in the past three months."; Cronbach's alpha = 0.76), adaptive appraisal (4 items; e.g., "Our family is optimistic and concentrates on the positives in most situations."; Cronbach's alpha = 0.71), social supports (4 items; e.g., "Our family has a good relationship with at least one supportive person."; Cronbach's alpha = 0.77) and compensating experiences. (4 items; e.g., "Our family has endured one or more extenuating factors in our lives."; Cronbach's alpha = 0.72).

Parental Resilience
The Parenting Resilience Elements Questionnaire (PREQ) was used to measure parental resilience (Suzuki et al., 2015). The scale consists of 13 items, which were grouped into three subscales with satisfactory reliability coefficients for each subscale: knowledge of the child's characteristics (5 items; e.g., "I can figure out the reason behind my child's trouble"; Cronbach's alpha = 0.81), perceived social support (4 items; e.g., "I have someone who I can trust with."; Cronbach's alpha = 0.69) and positive perception of parenting (4 items; e.g., "I enjoy talking to and playing with my child"; Cronbach's alpha = 0.75). The items were assessed on a seven-point Likert scale (1 = strongly disagree, 2 = disagree, 3 = somewhat disagree, 4 = undecided, 5 = somewhat agree, 6 = agree and 7 = strongly agree).

Children's Quality of Life
Children's quality of life was measured using the Quality of Life Questionnaire developed by Petry et al., (2009). Previous study about the development of the Quality of life scale show that this scale can be used in all age ranges of children with disability (Petry et al., 2009). The scale is grouped into six subscales. Each subscale showed sufficient internal consistency, with the exception of the subscale measuring physical well-being consisting of 8 items (e.g., "The person has seldom pain."; Cronbach's alpha = 0.37). This subscale was excluded because the items were not suitable for this research population as most of the children in those families did not have a physical disability. The questionnaire included consist of 42 items, grouped into five subscales: material well-being (9 items; e.g., "The person has aids in terms of activities and leisure."; Cronbach's alpha = 0.78), communication and influence (9 items; e.g., "The person makes his needs, feelings and wishes clear. The person is "heard"."; Cronbach's alpha = 0.80), socio-emotional well-being (6 items; e.g., "The person regularly does activities with group members from whom he has a preference."; Cronbach's alpha = 0.74), development (9 items; e.g., "The person makes optimal use of his current sensory abilities."; Cronbach's alpha = 0.82) and activity (9 items; e.g., "The person takes part in outdoor activities."; Cronbach's alpha = 0.82). The response options are 1 = strongly disagree, 2 = disagree, 3 = agree and 4 = strongly agree.

Administration
Parents completed all the questionnaires. The Inventory of Family Protective Factors (IFPP) was used to measure parents' perceptions of the family's protective factors.
Parents were asked to rate how much they agreed or disagreed with the statement (Gardner et al., 2008). The parents were also asked to rate how much they agreed with each of the statements about parental resilience that were presented for each item (Suzuki et al., 2015). Also, for Children's Quality of life, parents are able to estimate their child's quality of life (Petry et al., 2009). Parents were asked to indicate how much they agreed with the given statement in order to determine the quality of life for their children.

Statistical Analyses
An attrition analysis was performed to assess potential differences between participants with complete data (three waves) and those with missing data on either the second or third wave. There were no significant differences in the outcomes or the demographic data between parents who participated in three measurements and those who only participated in two. Cross-lagged path analysis was applied to examine the longitudinal associations between protective factors, parental resilience and children quality of life using Mplus (Muthen & Muthen, 1998. In the present study, protective factors are related to parental resilience and children's quality of life-this analysis controlled for the confounding effects of a child's age, gender, and family income. To determine model fit, we used the Comparative Fit Index (CFI) (Bentler, 1990), the Tucker-Lewis Index (TLI) (Kline, 2011), and the Root Mean Squared Estimate of Approximation (RMSEA) (Steiger, 1990). Maximum Likelihood (ML) was used to treat missings. However, we conducted sensitivity analyses using listwise deletion to test the robustness of our findings.

Factor Loadings of Latent Variables
Factor loadings were sufficient to good with lambda's ranging from 0.57 to 0.72 for Protective Factors and from 0.61 to 0.87 for Quality of Life. For Resilience, lambda's were good (> 0.76), except for the second loadings (perceived social support), which was 0.36 (wave 2) and 0.40 (wave 3).

Findings of the Cross-Lagged Panel Model
This study tests the cross-lagged panel model to investigate the longitudinal association and direction of an effect between protective factors, parental resilience, and quality of life. The cross-lagged panel model tests the causal direction of the relation between two variables over time (Newsom, 2015). This study estimated model fit by using the comparative fit index (CFI), Tucker-Lewis fit index (TLI), and the rootmean-square error of approximation (RMSEA). Model fit was acceptable which is RMSEA = 0.057, CFI = 0.909, TLI = 0.890. Protective factors at time 1 were positively associated with parental resilience at time 2 (B = 0.172, p = .046), but not with Quality of Life at time 2 (B = 0.109, p = .166). In turn, Parental Resilience at time 2 was positive related with Quality of Life at time 3 (B = 0.266, p = .000), and with Parental Resilience at time 3 (B = 0.455, p = .000). Quality of Life at time 2 was positively associated with Quality of life at time 3 (B = 0.596, p = .000), but not with Resilience at that time point (B = 0.116, p = .258). None of the covariates was associated with the latent construct, except for age with Quality of Life at time 2. Specifically, older children were more likely to report a higher Quality of Life at time 2 (B = 0.231, p = .001).
Furthermore, we tested the mediation effect of Parental Resilience from Protective Factors on Child quality of life. The mediated effect was obtained from Mplus with Bayesian mediation analysis with a Bayes estimator. There was a mediated effect from Protective Factors on Child Quality of Life via Resilience (estimate = 0.018; 95% CI = 0.000, 0.046).
The findings of the cross-lagged panel model are presented in Fig. 2. The result indicated that Protective Factors predicted Parental Resilience, and Parental resil- It seems as if more Protective Factors are associated with increased levels of Parental Resilience, which in turn leads to a higher Quality of Life. The model also suggested considerable stability of cross-lagged and autoregressive effects across waves, even after controlling for the autoregressive pathways (i.e., Parental Resilience and Quality of Life), age, gender, and income. Sensitivity analyses with listwise deletion (completers only) showed similar results, indicating the robustness of our findings.

Discussion
The present study examined to what extent protective factors could predict parental resilience and the quality of life of children with developmental disabilities. As there is hardly any research available on children with a developmental disability in Indonesia, and people from Asia may experience various pressures and perceptions of children with developmental disabilities and differences in social support that may differ from Non-Asian, Western culture (Heiman, 2002;Ow et al., 2004). We tested this model in a sample of 497 Indonesian families with children with developmental disabilities. The results from our study showed that protective factors predicted parental resilience, and parental resilience predicted the quality of life of children with developmental disabilities, supporting the idea of an indirect model in which parental resilience acts as a mediation variable between protective factors and the quality of life.
The fact that protective factors were found to predict parental resilience is in line with previous studies concluding that protective factors are related to parental resilience in a family with children with disabilities (Lawhorn, 2019;Richardson, 2002;Van Breda, 2001). More specifically, protective factors give parents a buffer to deal with challenges and deal with potential problems successfully (Duncan et al., 2005;Kalil, 2003). Protective factors assist parents in overcoming the challenges of their situation so that they can cope effectively (Pfeffer, 2014;Walsh, 2002).
From a cultural perspective, the way protective factors predict parental resilience in Indonesian culture and society may be different from western cultures. For instance, the ability of Indonesian parents to cope with a stressful situation is significantly improved by social support from spouses and other family members (Asa et al., 2021;Hidayati, 2011;Riany & Ihsana, 2021), such as sharing some responsibilities or generating money to support their need. Social support thus acts as a buffer to reduce stress, and it affects parents' coping strategies by providing parents with information or emotional support (Osofsky & Thompson, 2000). Furthermore, the ability to cope may protect parents from developing stress, and as a consequence, strengthen their resilience (Peer & Hillman, 2014;Zhao et al., 2021). In Indonesia, religious coping is a unique strategy (Apostelina, 2012;Asa et al., 2021;Daulay, 2018). This coping positively relates to being more grateful and positively interpreting the stressful situation (Rahmanawati, 2019). This gratitude and positive interpretation, in turn, may help parents to better deal with adverse situations, which is a relevant aspect of parental resilience (Suzuki et al., 2015). Patience and sincerity in experiencing the challenges were also revealed to be factors in this adaptive evaluation in previous studies in Indonesia. Parents who have a more positive outlook may become more compassionate, less selfish, and more caring, as well as more mindful, all of which contribute to positive parenting (Bayat, 2007;Riany & Ihsana, 2021).
In line with previous research, the present study also showed that parental resilience predicts the quality of life of children with developmental disabilities. Other studies have shown that high levels of parental resilience positively affect the quality of life of children with developmental disabilities (Migerode et al., 2012;Orbuch et al., 2005). Parents' ability to adapt and cope with their children's conditions may positively impact their children's quality of life (Cappe et al., 2011;Migerode et al., 2012;Suzuki et al., 2013). Children whose parents can adapt adequately to such adversity have a higher quality of life than children whose parents are less adaptable (Cappe et al., 2011).
Other factors related to children quality of life are the father's and mother's education level, family income, child's age, and types of disability (Widyawati et al., 2020). Socioeconomic status is likely to affect the home environment, which impacts all family members' productivity, emotional well-being, and health, including the child with a developmental disability (Arnaud et al., 2008;Park et al., 2002). Specifically, family income may affect the availability and accessibility of support for their children (Kusumastuti et al., 2014;Sidjaja et al., 2017).

Strengths, Weakness and Directions for Future Research
The current findings clearly support the relevance of protective factors to children's quality of life via parental resilience. To our knowledge, this is the first report of a longitudinal study on parents with children with developmental disabilities in Indonesia. Even though the current study's longitudinal design is one of its strengths, it was confined to only three-time points within a time frame of three years. Protective factors, parental resilience, and quality of life at different developmental stages and life course effects might benefit from more extensive longitudinal data extending from early diagnosis in children to adolescence and adulthood. Furthermore, it has been suggested that cross-lagged panel models benefit from four or more waves of research to see if lag escalations occur multiple times (Long et al., 2018).
Some other potential limitations need to be considered as well. First, not all parents of children with developmental disabilities in all Indonesian regions could be included, which is a limitation. Consequently, the findings cannot be generalised to all Indonesian parents of children with developmental disabilities. Second, only families that took their children to school or therapy centres were included in this study. Third, given that the majority of parents of children with developmental disabilities in this study have a low socioeconomic position, future research should cover a broader range of demographics among parents. It would therefore be recommended that further research should be undertaken in other areas outside Java island.
Another limitation of this study pertains to the missing information on individual functioning. Unfortunately, the study design did not allow us to collect data regarding the functional abilities of the individual children included in the study. It is likely that there are significant differences in functioning between the different diagnoses included in the study, which may have affected the validity of our findings. Although having a child with a developmental disability can have serious negative effects on that child's quality of life regardless of the disability's function (Townsend-White et al., 2012;Wong et al., 2016) parents may encounter various caregiving challenges depending on the type of disability (Sen & Yurtsever, 2007). Therefore, future studies should attempt to include information on individual diagnoses to control for individual differences in functioning abilities.

Conclusion and Implications
The present findings confirm the effect of protective factors on parent resilience and parent resilience on children's quality of life in Indonesian samples. The way protective factors affect parental resilience, such as using religion to cope with stress, social support from extended family members, and togetherness, may be unique to Indonesian families with developmental disabilities children. In Indonesian society, kinship and mutual collaboration are valued and linked to social support. When it comes to assisting parents, service providers could consider extended family or parents' local community. As a result, the current study's practical contribution is that interventions to strengthen parental resilience in Indonesian families by leveraging protective factors to improve children's quality of life.