تدوین مدل نقش آفرینی والدانه در همشیران افراد با اختلال طیف اتیسم براساس عوامل مؤثر آن: یک مطالعه داده بنیاد

Introduction

The family, as the first and most influential social institution, plays a fundamental role in shaping behavior and ensuring the mental health of its members. The presence of a child with special needs significantly affects the structure, functions, and interaction patterns of this system (Smith et al., 2008). Among these, Autism Spectrum Disorder (ASD) is recognized as one of the most serious and complex lifelong neurodevelopmental disorders, characterized by persistent challenges in social communication, repetitive behaviors, and restricted interests (Lord et al., 2020). These challenges impose significant physical and psychological stress on parents and alter the roles of other family members, including siblings (Karst & Van Hecke, 2012). Siblings of individuals with ASD play a unique role in daily care and support, exposing them to complex psychosocial experiences (Zucker et al., 2022). The sibling relationship, typically the longest-lasting relationship (Green, 2013), provides a valuable foundation for social and emotional development (McHale et al., 2012); a topic of double importance for children with ASD (Watson et al., 2021). Research has shown that having a sibling with ASD can lead to the development of empathy and responsibility (Walton & Ingersoll, 2015), but also expose them to psychological pressures such as anxiety and depression (Macks & Reeve, 2007).

However, the majority of research has mainly focused on the individual with ASD or on parental stress (Falk et al., 2014), while siblings' lives have often been neglected (Petalas et al., 2012). A deep, comprehensive understanding of their active role-taking has not yet been systematically investigated (Quatrosi et al., 2023). One of the most serious roles assumed by siblings is parentification (Nuttall et al., 2018; Beffel & Nuttall, 2020) referring to a process in which a child assumes parental roles beyond their developmental capacity, observed in instrumental and emotional forms (Rambo-Almanza, 2023).

While accepting this role may be an adaptive strategy in the short term, its continuation can have paradoxical consequences for siblings' mental health (Beffel & Nuttall, 2020). Few qualitative studies have investigated parentification and its contributing factors. Most previous research has relied on parents or teachers, not on siblings themselves. The present study aims to develop a model of factors affecting parentification in siblings of individuals with ASD using a grounded theory approach, serving as a basis for developing assessment tools and family-centered interventions.

Methodology

This qualitative study employed a grounded theory methodology (Strauss & Corbin, 1998). The target population included siblings over 12 years of age of individuals with ASD in Isfahan, Iran, in 2025 who were actively engaged in parentification. Participants were selected through purposive and theoretical sampling. Initial purposive sampling identified families with a child diagnosed with ASD and at least one typically developing child over 12 years. A semi-structured screening protocol was developed comprising five operational criteria based on the theoretical framework of parentification. Instrumental parentification was assessed through three criteria: (1) direct supervision and physical care (at least 10 hours/week), (2) participation in caregiving activities (at least 5 times/week), and (3) educational-tutoring responsibilities (at least 3 sessions/week). Emotional parentification was assessed through two criteria: (4) emotional support for parents or emotion regulation of the sibling with ASD (at least 3 times/week), and (5) participation in decision-making and planning (at least once/month). Inclusion required meeting at least three criteria. Content validity was confirmed by experts (CVR>0.78, CVI=0.92), and reliability was established through inter-rater agreement (0.85). Following screening, theoretical sampling proceeded with simultaneous coding. Emerging codes guided selection of subsequent participants. Data collection continued until theoretical saturation, achieved after 12 interviews, with 3 additional interviews confirming saturation. A total of 15 siblings (10 females, 5 males) participated. Semi-structured interviews lasted 50-60 minutes, focusing on individual, family, social, and interactive factors. Data analysis followed open, axial, and selective coding (Strauss & Corbin, 1998). Trustworthiness was ensured using Guba and Lincoln's (1982) four criteria.

Findings

Analysis yielded 41 open codes, 13 axial codes, and 5 selective codes: (1) intrafamilial factors (characteristics of the sibling with ASD, parenting styles, family structure, parents' health); (2) extrafamilial factors (lack of formal support, weakness of informal support); (3) sibling characteristics (demographic/positional, psychological/personality traits); (4) socio-cultural factors (cultural beliefs, social stigma, gender norms); and (5) factors related to diagnostic and acceptance process (age of diagnosis, parental acceptance). These categories were organized within a multi-level Pressure-Context-Readiness model. Intrafamilial factors and diagnostic/acceptance factors constituted the pressure level, imposing caregiving burden. Extrafamilial and socio-cultural factors served as the context, either exacerbating or moderating pressures. Sibling characteristics constituted the readiness level, determining the extent to which pressures lead to parentification. These three levels interact to explain the formation of parentification. The findings revealed that parentification is a dual-nature phenomenon. When pressures are tolerable, individual readiness (high empathy, responsibility) and supportive contexts direct the role toward positive outcomes including empathy development, independence, and identity formation. When pressures exceed tolerance, socio-cultural contexts exacerbate, and siblings lack psychological readiness, the role leads to anxiety, depression, and psychological burnout. Demographic characteristics showed mean age of 19.07 years (SD=4.54), 66.7% female, mean age gap of 3.93 years (SD=2.07), and mean parentification criteria of 3.93 (SD=0.70).

Conclusion

Parentification in siblings of individuals with ASD is a multidimensional, multi-level, and dual-nature phenomenon shaped by situational pressures, family-social contexts, and individual readiness. The Pressure-Context-Readiness model provides a systematic framework for understanding how these levels interact to determine whether outcomes follow growth pathways (empathy, responsibility, independence) or pathological pathways (anxiety, depression, and burnout). What determines which pathway is taken is not simply the parental role itself, but the intensity of pressures, quality of supportive contexts, and degree of individual readiness. Unlike previous studies focused on pathological aspects, this framework provides a comprehensive picture of parentification. Supportive interventions should be designed not to eliminate this role but to manage the balance between its positive and negative aspects. Interventions could include reducing burden when it leads to harm and strengthening developmental capacities when possible. Future research should utilize longitudinal designs and multi-site samples to examine parentification across different life stages and test the model in diverse cultural contexts.