Mental retardation, now more appropriately termed intellectual disability, is characterized by significant limitations in intellectual functioning and adaptive behavior, manifesting before the age of 18 ^[1]. Parents of children with intellectual disabilities face multifaceted challenges, including emotional, social, and financial stressors, which can profoundly impact their mental health ^[2]. Research consistently highlights that caregiving for children with disabilities is associated with elevated levels of stress and anxiety, often exacerbated by the severity of the child’s condition, limited social support, and socioeconomic constraints [3–5]. However, comparative studies examining stress and anxiety levels among parents of children with varying degrees of intellectual disability, alongside control groups, remain limited, particularly in low-resource settings.

The severity of a child’s intellectual disability plays a critical role in shaping parental well-being. Parents of children with severe-profound disabilities often report higher caregiving burdens due to increased dependency, behavioral challenges, and complex health needs [6]. Conversely, families of children with mild-moderate disabilities may experience stress related to societal stigma

and educational barriers ^[7]. Chronic medical conditions like thalassemia, though distinct from intellectual disabilities, also impose significant caregiving demands, offering a unique comparative lens to contextualize stress in parents of children with mental retardation ^[8].

Cultural and socioeconomic factors further modulate these experiences. In India, where joint family systems and rural-urban disparities prevail, familial support structures and access to healthcare services significantly influence parental coping mechanisms [9]. Studies in similar contexts emphasize the role of maternal stress, often higher than paternal stress, due to gendered caregiving roles [10]. Tools like the Family Interview for Stress and Coping in Mental Retardation (FISC-MR) and Hamilton Anxiety Rating Scale (HAM-A) have been validated to quantify these stressors, yet their application in diverse Indian populations remains underexplored ^[11,12].

Aim
To assess and compare stress and anxiety levels among parents of children with mild-moderate mental retardation, severe-profound mental retardation, and chronic medical conditions (thalassemia).

Objectives

1. To evaluate demographic and socioeconomic characteristics of parents and children across the three study groups.
2. To compare perceived stress (daily care, family emotions, social stress, financial stress) between mothers and fathers in each group.
3. To determine the association between the severity of the child’s condition and parental anxiety levels using standardized scales.

Source of Data Parents (both mother and father) of 143 children diagnosed with mental retardation (Groups A and B) or thalassemia (Group C) were recruited from the psychiatry and pediatric outpatient departments of Chhatrapati Pramila Raje (CPR) Hospital, Kolhapur, Maharashtra.

Study Design A clinical, cross-sectional, instrument-rated study was conducted from January 2024 TO December 2024.

Study Location The study was conducted at CPR Hospital, a district hospital affiliated with Rajarshee Chhatrapati Shahu Maharaj Government Medical College, Kolhapur.

Study Duration Data collection spanned 12 months (January 2024 TO December 2024).

Sample Size

A purposive sample of 143 participants was divided into three groups:

Group A: 50 parents of children with mild-moderate mental retardation.

Group B: 51 parents of children with severe-profound mental retardation.

Group C: 42 parents of children with thalassemia (control group).

Inclusion Criteria

For Children:

Diagnosed with mental retardation (ICD-10 criteria) or thalassemia.

Age <18 years.

IQ assessed using BKT and SFB by a clinical psychologist.

For Parents:

Age >18 years.

Residing with the child.

Both parents present during the interview.

Willing to provide informed consent.

Exclusion Criteria

For Children:

Brought by police or from orphanages.

Unaccompanied by both parents.

For Parents:

Non-consenting caregivers.

Caregivers other than biological parents.

Procedure and Methodology

Ethical Approval: Prior approval was obtained from the institutional ethics committee.

Data Collection: Semi-structured interviews were conducted in Marathi using:

A proforma for demographic details (age, income, education, residence).

FISC-MR Scale: To assess perceived stress across four domains: daily care, family emotions, social stress, and financial stress (11).

Hamilton Anxiety Rating Scale (HAM-A): To quantify anxiety severity (12).

Scoring:

FISC-MR: Scores ranged 0–4 (0 = nil, 4 = very high stress).

HAM-A: Total scores categorized as mild (<17), mild-moderate (18–24), or moderate-severe (25–30).

Sample Processing

D

ata were tabulated and analyzed using:

Chi-square tests for categorical variables.

Z-tests for comparing mean scores between groups.

p <0.05 was considered statistically significant.

Statistical Methods SPSS software (version 28.0) was used. Continuous variables were expressed as mean ± SD, and categorical variables as percentages.

Data Collection Interviews were conducted in a private setting to ensure confidentiality. Responses were translated and transcribed by bilingual researchers to maintain accuracy.

Table 1: Parental Stress and Anxiety Levels by Child’s Condition

†p-value for difference among groups (Group B vs Group A/C) is statistically highly significant​

This table compares perceived stress and parental anxiety levels across three groups: parents of children with mild-moderate mental retardation (Group A), severe-profound mental retardation (Group B), and thalassemia (Group C). The perceived stress scores are similar across the groups, with slightly higher scores for Group B, but these differences are not statistically significant (p>0.05). In contrast, the anxiety levels among mothers show significant differences, with mothers in Group B exhibiting substantially higher anxiety levels compared to Groups A and C (p<0.001), indicating a strong association between the severity of the child's condition and maternal anxiety.

Table 2: Demographic and Socioeconomic Characteristics of Parents and Children in Each Group

This table presents the demographic and socioeconomic characteristics across the three groups, showing no statistically significant differences in the age of parents and children, gender distribution of children, family type, literacy levels, occupation, and religion (all p-values >0.05). This suggests that the basic demographic and socioeconomic profiles are similar across the groups, providing a consistent baseline for comparing the impact of the child’s condition on parental stress and anxiety.

Table 3 Comparison of Perceived Stress Domains between Mothers and Fathers (within Each Group)

The table assesses perceived stress differences between mothers and fathers within each group across four domains: Daily Care, Family Emotions, Social Stress, and Financial Stress. Mothers consistently report higher stress levels than fathers across all domains and groups, with statistically significant differences noted in the Daily Care and Family Emotions domains across all groups (p<0.001). However, differences in Social and Financial Stress domains are not significant in most groups, except for a significant difference in Financial Stress in Group B (p<0.05), reflecting that stress impacts mothers more than fathers, particularly in areas directly related to caregiving and emotional responses.

Table 4: Severity of Child’s Condition vs. Parental Anxiety Levels (Hamilton Anxiety Rating Scale Categories

This table details parental anxiety levels as measured by the Hamilton Anxiety Rating Scale, categorized into mild, mild-moderate, and moderate-severe anxiety. It highlights a significant disparity in anxiety levels among mothers in Group B, where a significant number experience mild-moderate to moderate-severe anxiety, unlike in Groups A and C where no mothers reach moderate-severe levels. This underscores the impact of having a child with severe-profound mental retardation on maternal anxiety. Fathers across all groups predominantly fall into the mild anxiety category, with no significant differences in anxiety levels across the groups (p>0.05), indicating that maternal anxiety is more sensitive to the severity of the child's condition than paternal anxiety

Table 1: Parental Stress and Anxiety Levels by Child’s Condition This table compares the perceived stress and anxiety levels among parents of children with varying conditions. Other studies have similarly identified higher stress levels among parents of children with severe disabilities, consistent with the increased scores observed in Group B for severe-profound mental retardation. The significant difference in maternal anxiety between the groups underscores the heightened emotional burden borne by mothers of children with more severe conditions, aligning with research indicating greater psychological impact on parents as the child's condition worsens Atasoy R et al.(2018)^[13].

Table 2: Demographic and Socioeconomic Characteristics of Parents and Children in Each Group the lack of significant differences in demographic and socioeconomic characteristics across groups is pivotal for ensuring that the variations in stress and anxiety are likely due to the child's health condition rather than external variables. This finding is essential as it mirrors studies that control for demographic variables to isolate the effects of the child's condition on parental well-being Scherer N et al.(2019)^[14].

Table 3: Comparison of Perceived Stress Domains Between Mothers and Fathers (within Each Group) This table highlights that mothers generally experience higher stress levels than fathers, especially in the domains of daily care and family emotions. This trend is consistent with the broader literature that often shows mothers as primary caregivers experiencing more considerable stress due to their caregiving role compared to fathers Al-Farsi OA et al.(2016)^[15]. The significant differences in stress related to daily care activities and emotional challenges reflect findings from other studies emphasizing gender differences in caregiving stress Sharak FM et al.(2017)^[16].

Table 4: Severity of Child’s Condition vs. Parental Anxiety Levels (Hamilton Anxiety Rating Scale Categories) The elevated anxiety levels in mothers of children with severe-profound mental retardation (Group B) indicate a correlation between the severity of the child’s condition and parental anxiety, particularly for mothers. This significant increase in anxiety aligns with studies suggesting that parents' psychological distress is proportional to the child's dependency level and severity of the condition Atienza BA et al.(2016)^[17]. Unlike other studies, fathers did not show significant differences in anxiety levels across the groups, which may reflect differing coping mechanisms or roles in caregiving Kalashloo M et al.(2018)^[18]

The study aimed to explore the stress and anxiety levels among parents of children with mental retardation, providing valuable insights into the psychological impact of raising children with varying degrees of disability. The findings revealed several key conclusions:

1. Severity of Condition and Parental Anxiety: The study demonstrated that parents, particularly mothers, of children with severe-profound mental retardation experience significantly higher levels of anxiety compared to those whose children have mild-moderate conditions or a chronic medical condition like thalassemia. This indicates that the severity of the child's condition directly influences the emotional burden on parents, highlighting the need for targeted psychological support for these families.
2. Gender Differences in Stress: Across all groups, mothers reported higher stress levels than fathers, particularly in areas directly linked to daily caregiving and emotional responses to family dynamics. This gender disparity underscores the critical role of gender-specific support mechanisms and the need for interventions that address the unique challenges faced by mothers.
3. Demographic and Socioeconomic Factors: The uniformity in demographic and socioeconomic factors across the groups confirmed that the differences in stress and anxiety are more likely attributable to the child's health condition rather than external socioeconomic variables. This uniformity allows for a clearer understanding of the direct impacts of caregiving on parental stress and anxiety.
4. Impact on Family Dynamics: The study also highlighted the broader impact of raising a child with mental retardation on family dynamics, with significant stress noted in daily care and family emotional well-being. These findings stress the importance of holistic family support programs that include stress management training and resources to aid in daily caregiving tasks.
5. Recommendations for Support Services: Based on the significant levels of stress and anxiety observed, particularly in families of children with severe conditions, there is a pressing need for comprehensive support services. These services should include counseling, respite care, and community support groups to aid parents in managing stress and reducing anxiety, thereby improving the overall family well-being.

LIMITATIONS OF STUDY

1. Generalizability: The study's findings are based on a specific population at a single medical facility, which may limit the generalizability of the results. Different cultural, socio-economic, or healthcare contexts could yield different outcomes, suggesting a need for caution when extrapolating these results to broader populations.
2. Cross-sectional Design: The cross-sectional nature of the study captures stress and anxiety at a single point in time. This design does not account for how stress and anxiety may change as the child ages or as parents adapt to their caregiving roles over time. Longitudinal studies would be needed to understand these dynamics more comprehensively.
3. Subjective Measures of Stress and Anxiety: The study relies heavily on self-reported measures, which can introduce bias related to how individuals perceive or are willing to report their stress and anxiety levels. Objective measures or clinical evaluations could complement these findings and provide a more nuanced understanding.
4. Limited Scope of Variables: While the study controls for demographic and socioeconomic variables, other potentially influential factors, such as the presence of support networks, parents' coping mechanisms, or previous mental health history, were not extensively explored. These factors could significantly affect stress and anxiety levels but were not accounted for in the study's design.
5. Gender Differences: The study highlights significant gender differences in reported stress and anxiety, which are insightful but could also reflect societal norms about gender roles in caregiving rather than inherent differences. Further research might explore these aspects in different cultural contexts to parse out cultural from biological factors.
6. Sample Size and Power: Although the study included a reasonable number of participants, the power to detect small but clinically significant differences among the groups might still be limited. This could potentially lead to type II errors where true differences are not detected.
7. Reliability and Validity of Instruments: The study utilized specific tools to measure stress and anxiety, which, while validated, may not capture all dimensions of these complex constructs or may not be equally valid across different subgroups within the population (e.g., different socioeconomic or ethnic groups).

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