Luciana Sotero1
Fábio André Ferraz Fernandez1
Patrícia da Silva Bezerra2*
Juliana Maciel Queiroz1
Fernando Augusto Ramos Pontes2
Simone Souza da Costa Silva2- 1Faculty of Psychology and Educational Sciences, University of Coimbra, Coimbra, Portugal
- 2Postgraduate Program in Theory and Research of Behavior, Federal University of Pará, Belém, Brazil
Cerebral Palsy (CP) is a chronic and non-progressive condition that affects motor and cognitive development, generating various limitations in daily activities and requiring continuous care. The diagnosis can have profound impacts on family dynamics. The quality of life of parents/caregivers may be influenced by multiple factors, such as physical and emotional overload, parental stress, socioeconomic difficulties, among others. Thus, the aim of this study was to investigate the quality of life of parents/caregivers of children and adolescents with CP in Portugal, considering sociodemographic, individual (resilience, parental stress), and family (family functioning) variables. A total of 176 caregivers participated, including 149 mothers and 27 fathers. The following instruments were administered: Sociodemographic Questionnaire, World Health Organization Quality of Life - Bref (WHOQOL-BREF), Resilience Scale (CD-RISC), Parental Stress Index (PSI), and the Systemic Clinical Outcome Routine Evaluation (SCORE-15). The results revealed that medium/high socioeconomic status favored the physical and environmental domains of quality of life, whereas low socioeconomic status was positively associated with social relationships. Lower levels of parental stress, greater resilience, and better family functioning were found to be associated with better quality of life among caregivers of children/adolescents with Cerebral Palsy. The findings reinforce the importance of developing family-centered interventions that promote resilience and reduce parental stress, contributing to the improvement of caregivers’ quality of life.
1 Introduction
Cerebral Palsy (CP) is a chronic, non-progressive disorder that persists throughout the lifespan. Primarily motor and/or cognitive in nature, it may involve one or more aspects and associated impairments, such as sensory alterations, hearing and/or visual impairments, behavioral changes, cognitive deficits, communication difficulties, seizures, among others (Rosenbaum et al., 2007; Cunha et al., 2019).
Cerebral Palsy is classified into five levels, grouped into two broad categories based on the degree of motor impairment presented by individuals. Levels I, II, and III fall within the group with lower motor impairment. Conversely, individuals presenting greater motor impairment correspond to severity levels IV and V, showing the severe motor limitation and requiring use of a wheelchair for mobility (Silva et al., 2010).
Despite these limitations, every child with a disability, including those with CP, has the potential to develop important skills. Nevertheless, CP imposes significant restrictions, particularly motor limitations, that impact the child’s daily living activities, requiring care that differs from that provided to a typically developing child of the same age (Paul et al., 2022). Furthermore, different levels of disability are also an aspect that can increase the caregiving burden for caregivers (Ceylan and Demirdel, 2025).
Thus, being the caregiver of a child with Cerebral Palsy can involve a series of challenges. The caregiving role is closely linked to the family, a system historically recognized as the primary context for promoting and maintaining the independence and health of its members, and considered essential for development, including in situations of disability (Freitag et al., 2020).
The diagnosis of Cerebral Palsy, which may occur during the fetal or neonatal periods or early childhood (Ribeiro et al., 2013), can foster the emergence of family conflicts and abrupt changes in daily routines and other aspects of family life. Such transformations in family functioning, often unexpected, have the potential to significantly affect the quality of life of those involved (Akkaya et al., 2022).
Family functioning is reflected in the way its members interact and perform their roles in order to meet each other’s emotional, social, and practical needs. It involves resources such as communication, which influences the family’s ability to adapt to new situations and difficulties (Vilaça et al., 2014; Izzo et al., 2022), and can therefore lead to greater or lesser quality of life.
The World Health Organization (WHO) defines quality of life as “an individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards, and concerns” (The WHOQOL Group, 1994, p. 28). Quality of life can be influenced by physical health, psychological state, level of independence, social relationships, and environment (Pemau et al., 2024; The WHOQOL Group, 1995).
This broad definition provides an important basis for understanding how different life dimensions can be affected by crisis situations. In the case of caregivers of children with disabilities, these crises often include additional challenges related to the demands of intensive care.
In this regard, when investigating the quality of life of caregivers of children with neurodevelopmental disorders, Duarte et al. (2022) found that factors such as socioeconomic difficulties, lower mobility levels of the child, difficulties accessing health services, and caregiver overload may contribute to lower quality of life. Conversely, social support was identified as a protective factor that contributes to improved quality of life among family members (Duarte et al., 2022).
The quality of life of mothers of children with physical and intellectual disabilities was examined by Fruhling et al. (2022) using the WHO Quality of Life Questionnaire. Their results showed that mothers face significant physical and emotional overload, which negatively impacts their mental health and quality of life.
Quality of life is a multifactorial phenomenon influenced by several variables, one of which is parental stress. Stress may be understood as the body’s response to a threatening situation. Parental stress, specifically, refers to the tensions generated within the parenting context, characterized by a perceived imbalance between parenting demands and the resources available to meet them (Abidin et al., 2006). Numerous factors may be associated with parental stress, including parental characteristics, child characteristics, socioeconomic factors, cultural context, among others (Silva et al., 2019).
Aiming to evaluate stress and quality of life among parents of children with intellectual disabilities, Staunton et al. (2020) conducted a study with 33 parents in Ireland. They applied a Behavior Scale, the Parenting Stress Index (PSI), a Family Support Scale, and a Family Quality of Life Scale. The main findings indicated that the more challenging behaviors the child exhibited, the higher the levels of parental stress and the lower the quality of life reported by parents. Meanwhile, greater perceived social support was associated with lower stress levels.
Seeking to further understand parental stress, another study conducted by Benešová and Sikorová (2022) included 40 parents of children with disabilities and 40 parents of typically developing children. The Parenting Stress Index (PSI) was used for data collection. The results showed that parents of children with disabilities exhibit higher levels of stress than parents of children without disabilities. This stress is associated with factors such as emotional and physical overload, difficulties in accessing adequate care, and increased perceptions of burden among parents.
In addition to parental stress, another factor that can influence quality of life is resilience. Resilience is understood as the capacity of a system to face adversity or crises and recover successfully (Masten, 2007). Studies have investigated resilience among families of children with disabilities. Cunha et al. (2019) examined resilience among mothers of children with CP by administering the CD-RISC scale to 92 mothers whose children were receiving rehabilitation services in the city of Belém, Brazil. Their findings indicated that high resilience scores were significantly associated with persistence, self-efficacy, spirituality, adaptability, positive acceptance, and control, highlighting that resilience can be influenced by both internal and external factors.
A meta-analysis on resilience among caregivers of children with disabilities was conducted by Iacob et al. (2020). Twenty-six studies involving a total of 6,207 caregivers were analyzed. Among the main results, positive associations were found between resilience and social support, coping, health perceptions, and life satisfaction. Conversely, higher levels of stress, depression, and anxiety were associated with lower levels of resilience.
A study conducted by Ceylan and Demirdel (2025) investigated psychological resilience and caregiver burden among parents of children with disabilities. The results indicated that children’s mobility limitations, communication difficulties, learning and feeding problems, as well as caregivers’ chronic illnesses or musculoskeletal issues, were associated with higher levels of caregiver burden. Furthermore, caregivers experiencing moderate burden exhibited lower levels of resilience compared to those with mild burden.
These and other studies emphasize the importance of considering multiple factors in understanding caregivers’ quality of life, especially in the context of disability. For parents or caregivers of children with Cerebral Palsy, it is essential to recognize that interactions among individual, family, and contextual variables play a crucial role in their overall wellbeing. Analyzing these variables allows for a broader understanding of the challenges faced and the resources available, in addition to contributing to the development of adequate support strategies that account for the particularities of each family and the challenges of daily life.
Thus, based on the literature on parental stress, resilience, and family functioning in disability contexts, we formulated the expectation that caregivers with lower levels of parental stress would report higher quality-of-life scores. We likewise expected that higher levels of individual resilience would be associated with better quality of life, particularly in the psychological domain. Similarly, we assumed that more positive family functioning—characterized by greater resources and fewer difficulties—would predict better indicators of quality of life. Finally, we anticipated that socioeconomic status would exert a significant influence on the physical and environmental domains, benefiting caregivers with better economic conditions, whereas lower socioeconomic status might be associated with more positive perceptions in social relationships, possibly due to the mobilization of informal support networks.
Accordingly, the aim of this study was to identify sociodemographic (sex, age, marital status, number of children, and socioeconomic status), individual (resilience and parental stress), and family (family functioning) variables associated with each of the domains (Physical, Psychological, Social Relationships, and Environment) of the quality of life of parents/caregivers of children and adolescents with Cerebral Palsy (CP).
2 Materials and methods
The present research is a descriptive, empirical study with a quantitative approach, using convenience sampling. A total of 176 family members participated, including 149 mothers and 27 fathers of children and adolescents with Cerebral Palsy (CP), residing in 10 municipalities in Portugal. The sample of 176 caregivers was considered adequate for the design and objectives of the study. In research involving specific populations, such as parents and caregivers of children with Cerebral Palsy, recruitment tends to be limited. Studies on quality of life in similar contexts have presented comparable sample sizes, ensuring representativeness and comparability within this research field (Al-Wardat et al., 2025; Rodríguez et al., 2022; Turnage et al., 2025; Park, 2023; Duran and Akpınar, 2022). In addition, the number of participants meets the parameters recommended for multiple regression analyses with up to ten independent variables, ensuring adequate statistical power (Hair et al., 2019). It is worth noting that the data collection period, conditioned by the schedule of the postdoctoral project to which this study was linked (described later), also influenced the final sample size, as recruitment needed to be completed within the timeframe planned for the research.
Regarding the inclusion criteria, participants had to be informal caregivers of a child or adolescent with CP, aged 1–19 years. Data collection was conducted in 10 Cerebral Palsy Associations (APC) located in Portugal, institutions that aim to promote social inclusion and rehabilitation of individuals with CP.
3 Instruments
3.1 Sociodemographic and supplementary data questionnaire
Developed by the researchers, this instrument aimed to provide sociodemographic characterization of the sample, gathering data from the caregivers (sex, age, education level, occupation, marital status, among others) and from the child or adolescent (sex, level of CP impairment, among others).
3.2 World Health Organization Quality of Life - Bref (WHOQOL-BREF)
This is the abbreviated version of the World Health Organization Quality of Life – 100 [WHOQOL-100; World Health Organization Quality of Life Group, 1998; Portuguese version by Vaz-Serra et al. (2006)], comprising 26 items intended to assess the quality of life of adults. Its items are subdivided into four domains: (1) Physical: evaluates aspects related to physical health, such as energy and fatigue, pain and discomfort, sleep and rest, mobility, activities of daily living, dependence on medication or treatments, and work capacity; (2) Psychological: involves emotional and psychological aspects, including positive feelings, thinking, learning, memory and concentration, self-esteem, body image and appearance, and negative experiences such as anxiety, depression, and hopelessness; (3) Social Relationships: focuses on the quality of interpersonal relationships, including social support, satisfaction with sexual life, and support received from friends and family; (4) Environment: covers physical safety and protection, home environment, financial resources, access to health and social services, opportunities for leisure, and transportation. All items are answered on a five-point Likert scale ranging from 1 (Strongly agree) to 5 (Strongly disagree).
3.3 Connor-Davidson Resilience Scale (CD-RISC)
This scale [Connor and Davidson, 2003; Portuguese version by Anjos et al. (2019)] and quantifies individual resilience and consists of 25 items. It is divided into four factors: (1) Personal Competence, High Standards, Tenacity, and Control; (2) Trust in One’s Instincts, Tolerance for Negative Affect, and Strengthening Effects of Stress; (3) Positive Acceptance of Change and Secure Relationships; and (4) Spiritual Influence.
Items are rated on a five-point Likert scale ranging from 0 (Not true) to 4 (Almost always true).
3.4 Parenting Stress Index – short form (PSI-SF)
This instrument [Abidin, 1995; Portuguese version by Santos (2011)] assesses perceived parental stress and helps identify sources and different types of stress arising from parenting. The questionnaire contains 36 items distributed across three dimensions, each with 12 items: (1) Parental Stress; (2) Dysfunctional Parent–Child Interaction; (3) Difficult Child. Items are answered on a five-point Likert scale ranging from 1 (Strongly agree) to 5 (Strongly disagree).
3.5 Systemic Clinical Outcome Routine Evaluation (SCORE-15)
This tool [Stratton et al., 2010; Portuguese version by Vilaça et al. (2014)] assesses family functioning and contains 15 items in total. The items are distributed across three subscales: (1) Family Resources; (2) Family Communication; (3) Family Difficulties.
Responses are given on a five-point Likert scale ranging from 1 (Describes us: Very well) to 5 (Describes us: Very badly).
Regarding ethical considerations, the present study is part of a broader research project titled “Caregivers of children and adolescents with Cerebral Palsy : a comparative study between Brazil and Portugal.” This project is affiliated with a Postdoctoral Program in Health Psychology at the Faculty of Psychology and Educational Sciences of the University of Coimbra (FPCEUC) and the Pará State University (UEPA) in Brazil. The project received approval from the Ethics and Research Deontology Committee of the Faculty of Psychology and Educational Sciences of the University of Coimbra, Portugal. Only the data collected in Portugal were used for this study.
As for data collection procedures, initial contact was made via e-mail with the Directors of the Cerebral Palsy Associations (APCs) in Portugal. After inviting potential participants, members of the technical team at each APC explained the objectives of the research and identified available times for data collection. Subsequently, the researchers traveled to the institutions on the scheduled dates and times, where, in a reserved room, they re-presented the objectives of the study, its confidential and anonymous nature, as well as its voluntary character, before administering the instruments. All participants signed the Informed Consent Form (ICF).
Regarding data analysis procedures, the data were entered into the Statistical Package for the Social Sciences (SPSS – version 22). The sample size was determined to ensure sufficient statistical power to detect effects in hierarchical multiple linear regression models, considering the most complex model in this study (14 predictor variables: 5 sociodemographic, 3 resilience, 3 stress, and 3 family functioning dimensions). The determination of the sample size followed Cohen’s (1988) guidelines for detecting medium effect sizes in multiple regression analyses. To verify the adequacy of the collected sample, a post hoc power analysis (sensitivity analysis) was conducted, using an expected medium effect size (f2 = 0,10), a significance level of α = 0,05, and a target power of 0.80. With 176 participants, the study demonstrated sufficient sensitivity to detect small to medium effects, exceeding the minimum requirement for medium effects (f2 = 0,15), which would have required approximately 135 participants.
Initially, variables related to sex, age, marital status, number of children, and socioeconomic level were categorized. Data obtained from the WHOQOL-BREF, PSI-SF, CD-RISC, and SCORE-15 were first subjected to reverse scoring of negative items, followed by calculation of scores in the WHOQOL-BREF domains, dimensions and total scale of the PSI-SF, and subscales and total scale of the SCORE-15. Descriptive analyses were then carried out to characterize the sample and results obtained for each of the instruments applied.
To meet the study’s objective, hierarchical multiple linear regression analyses were performed using two models to assess the effect of sociodemographic variables (sex, age, marital status, number of children, and socioeconomic status), entered in the first model, and resilience dimensions, parental stress, and family functioning, entered in the second model, on each domain (Physical, Psychological, Social Relationships, and Environment) of caregivers’ quality of life.
To ensure the assumptions of multiple linear regression were met (for all analyses conducted), the following conditions were examined: (1) independence of residuals using the Durbin-Watson test, with values close to 2; (2) multicollinearity, confirmed by tolerance values sufficiently distant from 0 and Variance Inflation Factor (VIF) values below 5. Additional methodological details in the Supplementary material, which consists of the master’s dissertation from which the present article was derived.
4 Results
4.1 Characterization of the participants
Table 1 presents the characterization of the sample, which consisted of 176 caregivers, and displays the characteristics of the child (sex and level of impairment according to the GMFCS).
Table 1. Characterization of the sample: variables related to caregivers.
As shown, the participants were 149 mothers and 27 fathers, aged between 24 and 75 years (M = 41.85; SD = 8.915). Most were employed (n = 145; 86.3%), had completed basic education (n = 111; 72,4%), were married (n = 110; 62.5%), and had more than one child (n = 107; 62.9%). Most caregivers fell within the medium (n = 78; 44.3%) and low (n = 77; 43.8%) socioeconomic levels.
Cerebral Palsy Regarding the children, 57.4% were between one and nine years old (children), and 42.0% were between 10 and 19 years old (adolescents). The age range used to differentiate between children and adolescents followed the age categorization defined by the World Health Organization (1989). The sample was mostly male (n = 110; 62.5%). Concerning severity, children with Cerebral Palsy (CP) at Level I - the least severe level - predominated (n = 60; 34.5%).
4.2 Relationships between the quality of life domains and sociodemographic variables, resilience, stress, and family functioning
This section presents the data from the domains of the quality of life instrument and their relationships with sociodemographic variables of both the caregivers and the child in Tables 1, 2, resilience, stress, and family functioning. Accordingly, the section is divided into four subsections: Physical Domain, Psychological Domain, Social Relationships, and Environmental Domain.
Table 2. Characterization of the sample: variables related to the child with Cerebral Palsy.
4.2.1 Physical domain
Concerning the Physical domain of Quality of Life, Table 3 presents its relationships with individual and family variables. Several relationships stood out, as shown.
Table 3. Variables associated with the Physical domain of Quality of Life.
A direct association was found between the Physical domain of Quality of Life and sociodemographic variables; that is, caregivers with medium/high socioeconomic levels demonstrated better physical quality of life. Another notable aspect was Parental Stress, where a direct association was observed between the variables, meaning that lower stress levels were associated with better physical quality of life.
Regarding Family Resources, an inverse association was identified, indicating that more resources were associated with better physical quality of life. An inverse association was also observed between Family Difficulties and this domain, suggesting that fewer difficulties were associated with better physical quality of life.
4.2.2 Psychological domain
Concerning the Psychological domain of Quality of Life, Table 4 presents its relationships with individual and family variables.
Table 4. Variables associated with the Psychological domain of Quality of Life.
A direct association was found between the number of children and the Psychological domain, meaning that caregivers with more than one child showed better psychological quality of life. Regarding Resilience, higher scores in the Personal Competence, High Standards, and Tenacity domain were associated with higher Psychological quality of life.
Concerning Parental Stress, an association was found between the “Difficult Child” dimension and psychological quality of life; that is, lower levels of parental stress in this dimension were related to better psychological quality of life. Family Functioning also stood out: more family resources and fewer family difficulties were associated with better quality of life in this domain.
4.2.3 Social Relationships domain
Table 5 concerns the Social Relationships domain of Quality of Life and its associations with the other investigated variables.
Table 5. Variables associated with the Social Relationships domain of Quality of Life.
Regarding socioeconomic level, an inverse association was found between this variable and the Social Relationships domain, meaning that caregivers with a low socioeconomic level showed better quality of life in terms of social relationships. Regarding Parental Stress, a direct association was found, indicating that lower stress levels were associated with better social relationship quality of life. Concerning Family Resources, a domain of Family Functioning, a direct association was observed, meaning that higher resources were associated with better quality of life in this domain.
4.2.4 Environmental domain
Finally, Table 6 presents the correlations between the Environmental domain of Quality of Life and the variables Resilience, Stress, and Family Functioning.
Table 6. Variables associated with the Environmental domain of Quality of Life.
Socioeconomic level showed a direct and significant association with the Environmental domain of Quality of Life in both the first and second regression models (Model 1: β = 0.241, p = 0.002; Model 2: β = 0.143, p = 0.025). This result indicates that participants with higher socioeconomic levels tend to report better environmental quality of life. A higher socioeconomic level may provide access to safer and more comfortable living conditions, greater financial security, and increased availability of resources such as housing, healthcare, and leisure opportunities. Even after controlling for individual and family variables, such as resilience, parental stress, and family functioning, the effect of socioeconomic level remained significant, highlighting its independent contribution to the environmental aspects of wellbeing.
Regarding Parental Stress, a direct association was observed, meaning that lower parental stress was associated with better environmental quality of life. Concerning Family Resources (Family Functioning), an inverse association was found, indicating that greater resources were associated with better environmental quality of life. An inverse association was also observed between Family Difficulties (Family Functioning) and the Environmental domain, showing that fewer difficulties were related to higher environmental quality of life.
Additionally, the results indicate that socioeconomic level plays a determining role in the Environmental domain of Quality of Life, even when considering individual variables (such as stress and resilience) and family variables (such as family functioning). Thus, caregivers with greater purchasing power tend to report better environmental conditions, access to services, transportation, leisure, and material resources.
5 Discussion
The analysis of the data revealed that caregivers of children with disabilities who have a partner reported better quality of life in the environmental domain. This finding aligns with studies indicating that spousal support acts as a protective factor when facing the demands of caregiving, facilitating task sharing and access to resources (Ximenes et al., 2022; Amêndola et al., 2011; Ying et al., 2021).
The predominance of married caregivers seems to represent a potential source of strengthening and support when caregiving responsibilities are shared between spouses (Amêndola et al., 2011), which may contribute to caregivers reporting that they rely on their partners to purchase medications, schedule appointments, and assume, to some extent, part of the caregiving duties (Costa et al., 2013).
Recent studies (Yildirim et al., 2022; Kim et al., 2024) show that spousal support is associated with lower burden and better quality of life among caregivers of children with disabilities, whereas the absence of such support increases the risk of overload, mental health impairments, and difficulties in family dynamics. Moreover, qualitative studies and evaluations of family-centered interventions also indicate that programs that engage partners as sources of instrumental and emotional support improve family outcomes (Wang et al., 2024; Muthukaruppan et al., 2022).
Despite the protective effects of spousal support, it is important to recognize that living with a child with a disability can also represent a source of tension and a profound reconfiguration of family dynamics. The literature indicates that adapting to new caregiving demands tends to challenge parents’ emotional, communicational, and conjugal boundaries, potentially generating relational crises and conflicts over role distribution (Azevedo et al., 2019; Londero et al., 2021). Continuous demands associated with the disability—such as the need for constant supervision, therapeutic follow-up, and management of household tasks—consume time and energy, which often reduces opportunities for marital interaction and self-care, contributing to emotional distancing between partners (Londero et al., 2021; Anjos and Morais, 2021).
However, it is important to emphasize that conflict and support are not mutually exclusive dimensions. Several studies have shown that, even in the presence of tensions, many couples manage to maintain patterns of cooperation, empathy, and complementarity in task management and mutual emotional regulation (Ying et al., 2021; Ximenes et al., 2022; Sulaimani et al., 2023). In other words, the marital relationship can simultaneously express both vulnerability and resilience, functioning as a space for negotiation and growth, provided that the couple has adequate relational resources and external support. This ambivalence reinforces the idea that the impact of disability on the couple depends less on the presence of the stressor itself and more on the family system’s ability to mobilize adaptive resources to cope with it.
It was observed that parents with more than one child demonstrated better psychological quality of life. This pattern has been reported in studies highlighting the role of siblings and extended family networks as sources of practical and emotional support (Lemos, 2015; Alves and Serralha, 2019; Xia et al., 2023; García-Grau et al., 2024). However, the fact that the present study identifies the presence of additional children as a positive factor does not exclude the possibility that there may also be problems involving sibling relationships or parent-child interactions within these same families, as both aspects may coexist given that families are dynamic systems in constant movement and adaptation (Costa et al., 2018). Recent studies reinforce that the effect of siblings on family dynamics is ambivalent; that is, siblings may both reduce caregiver burden and create new sources of conflict and negotiation among family members (Lee et al., 2025; Rurka et al., 2023).
Regarding socioeconomic level, caregivers with medium/high socioeconomic status exhibited better quality of life in the physical and environmental domains, a result consistent with studies positioning socioeconomic status as a social determinant of health, as it provides greater access to therapies, equipment, and services (Figueiredo et al., 2022; Duarte et al., 2022). However, recent empirical findings indicate that in low-income contexts, informal networks and community-based strategies may partially compensate for the lack of financial resources, leading to higher perceptions of social support in certain domains (Izzo et al., 2022; Sulaimani et al., 2023). This pattern underscores the importance of differentiating material effects (resources) from relational effects (social support) when interpreting the influence of socioeconomic status on quality of life.
The results showed that socioeconomic level was a significant predictor of the Environmental domain of Quality of Life, even after controlling for individual (resilience and stress) and family (family functioning) variables. In other words, socioeconomic context acts as a structural determinant of quality of life, influencing families’ capacity to respond adaptively to caregiving demands. Recent studies corroborate this relationship, demonstrating that family income and financial stability directly influence caregivers’ quality of life by facilitating access to therapies and rehabilitation equipment and by reducing financial stress and daily strain (Duarte et al., 2022; Figueiredo et al., 2022; Ying et al., 2021).
Conversely, studies involving low-income populations reveal that material constraints intensify parental stress and limit opportunities for leisure and self-care (Chen et al., 2020; Cardoso et al., 2021). Although social and family support may mitigate some of these effects, the data suggest that economic capital remains a decisive resource for caregivers’ environmental and psychological wellbeing. Thus, public policies and psychosocial interventions targeting this population should consider structural inequalities in income and access to services as central elements in promoting the quality of life of families living with disability.
In this study, caregivers with a low socioeconomic level exhibited better quality of life in the Social Relationships domain. It is assumed that caregivers with greater financial difficulties may seek more support from others, such as extended family, friends, neighbors, professionals, and other parents of children with disabilities. Caregivers with lower socioeconomic status may seek more support (informational, emotional, material, among others) because they have more unmet needs. In summary, the socioeconomic level of parent-caregivers appears to be a relevant sociodemographic determinant, as it influences most domains of quality of life.
Regarding individual resilience, caregivers with greater personal competence, high standards, and tenacity (capacity to withstand breakdown) exhibited better psychological quality of life. Recent empirical and meta-analytic studies show that resilience acts as a mediator between stressors and caregiver well-being, being positively associated with adaptive coping strategies and the perception of effectiveness (Cunha et al., 2019; Iacob et al., 2020; Chung et al., 2023). Reviews on interventions that strengthen parental capacities and family empowerment also indicate gains in resilience and quality of life when families participate in family-centered programs (Poojari et al., 2024; Mestre et al., 2024).
An inverse association was also found between parental stress and quality of life in all domains, which converges with national and international evidence (Staunton et al., 2020; Benešová and Sikorová, 2022; Ribeiro et al., 2013). Recent studies suggest that psychoeducational support interventions, behavior management strategies, and support networks can reduce parental stress and improve QoL indicators, especially when integrated into family-centered care models (Poojari et al., 2024; Al-Otaibi et al., 2024).
Finally, family functioning proved to be relevant: greater family resources and fewer difficulties were associated with better quality of life in the physical, psychological, and environmental domains. This finding supports the systemic perspective that family functioning is a key determinant of adaptation to chronic conditions (Vilaça et al., 2014; Izzo et al., 2022). Research reinforces that families with effective communication, shared responsibilities, and problem-solving strategies exhibit better well-being and quality-of-life outcomes and respond more positively to family-centered interventions (Mundakir et al., 2024; Mestre et al., 2024).
In summary, the results suggest that integrated interventions that simultaneously address personal resources (resilience), the reduction of parental stress, the strengthening of family functioning, and improved access to services (policies and care coordination) may be the most promising strategies for improving the quality of life of caregivers of children with Cerebral Palsy. Evidence from family interventions and family–professional collaboration models supports this direction, showing positive effects on quality of life and caregiver burden when actions are multifaceted and adapted to the local context (Poojari et al., 2024; Al-Otaibi et al., 2024).
6 Final considerations
The results of this study demonstrate that the quality of life of parents and caregivers of children and adolescents with Cerebral Palsy is influenced by an interdependent set of individual, family, and contextual factors. Lower levels of parental stress, higher resilience, and better family functioning were associated with a more positive perception of quality of life, favorably affecting the physical, psychological, social, and environmental domains. These findings reinforce the role of families’ emotional and relational resources as key mediators of wellbeing, in line with the literature that identifies resilience and family cohesion as central mechanisms of adaptation to disability.
Additionally, socioeconomic level proved to be a relevant determinant, influencing the different domains of quality of life in distinct ways. Caregivers with greater financial resources reported higher physical and environmental wellbeing, while those with lower socioeconomic status reported better quality in social relationships, possibly due to their mobilization of informal support networks. This complexity reinforces that quality of life depends not only on the availability of material resources but also on the family’s capacity to activate social and emotional support.
From a practical standpoint, these results suggest that family-centered interventions that integrate strategies to reduce parental stress and strengthen resilience may be particularly effective in promoting caregiver wellbeing. Psychoeducational programs that value family communication, the sharing of caregiving responsibilities, and parental self-care may help reduce the impact of disability-related demands and strengthen affective bonds. Furthermore, public policies that expand access to rehabilitation services, psychological support, and social benefits may help mitigate inequalities and promote more sustainable and healthy caregiving.
Regarding limitations, it should be noted that the sample was obtained by convenience and consisted mostly of mothers associated with Cerebral Palsy organizations in Portugal, which restricts the generalization of the findings. The wide age range of the children and adolescents (1–19 years) represents another limitation, as caregiving demands vary significantly according to physiological and cognitive development. Moreover, detailed information about family composition and geography—such as the presence of grandparents or other caregivers in the household—and about families with more than one member with Cerebral Palsy was not collected, although these factors may influence caregiving burden and caregiver wellbeing. Finally, the cross-sectional design and the use of self-report measures limit causal inferences and may be subject to perception biases.
It is recommended that future research broaden sample representativeness by including caregivers from different regional, economic, and structural contexts, and consider longitudinal or mixed-methods designs that allow for an understanding of how coping strategies evolve over time. Qualitative studies may contribute to capturing the subjective experiences of caregiving and relational dynamics in multigenerational families. It is also relevant to investigate the effectiveness of resilience-based and family-support interventions in order to understand their effects on the mental health and quality of life of caregivers and of the children with disabilities themselves.
In summary, this study highlights that the well-being of caregivers of children and adolescents with CP depends on the interplay between personal, family, and social factors. Thus, understanding and intervening across these multiple levels is essential to promoting healthier and more sustainable family contexts, contributing to the inclusion and integral development of all family members.
Data availability statement
The original contributions presented in this study are included in this article/Supplementary material, further inquiries can be directed to the corresponding author.
Ethics statement
The studies involving humans were approved by Research Ethics and Deontology Committee, Faculty of Psychology and Educational Sciences, University of Coimbra, Portugal. The studies were conducted in accordance with the local legislation and institutional requirements. The participants provided their written informed consent to participate in this study.
Author contributions
LS: Project administration, Writing – original draft, Conceptualization, Supervision. FF: Methodology, Formal analysis, Conceptualization, Writing – original draft, Investigation. PB: Conceptualization, Writing – review & editing. JQ: Formal analysis, Investigation, Methodology, Project administration, Writing – original draft. FP: Supervision, Writing – review & editing. SS: Formal analysis, Supervision, Writing – review & editing.
Funding
The author(s) declared that financial support was received for this work and/or its publication. The authors declared that they received support from the Brazilian National Council for Scientific and Technological Development (CNPq) for the publication of this article.
Conflict of interest
The author(s) declared that this work was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.
Generative AI statement
The author(s) declared that generative AI was used in the creation of this manuscript. Generative AI was employed to adjust specific elements of the article’s translation, aiming to enhance its fidelity and accuracy.
Any alternative text (alt text) provided alongside figures in this article has been generated by Frontiers with the support of artificial intelligence and reasonable efforts have been made to ensure accuracy, including review by the authors wherever possible. If you identify any issues, please contact us.
Publisher’s note
All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.
Supplementary material
The Supplementary Material for this article can be found online at: https://www.frontiersin.org/articles/10.3389/feduc.2025.1671097/full#supplementary-material
References
Abidin, R. R. (1995). Parenting stress index: Professional manual, 3rd Edn. Lutz, FL: Psychological Assessment Resources.
Abidin, R. R., Flens, J. R., and Austin, W. G. (2006). “The parenting stress index,” in Forensic uses of clinical assessment instruments, ed. R. P. Archer (England: Routledge), 297–328.
Akkaya, K. U., Bezgin, S., and Elbasan, B. (2022). The assessment of factors related to family life in children with cerebral palsy. J. Curr. Pediatr. 20, 250–257. doi: 10.4274/jcp.2022.48802
Al-Otaibi, S. L., Algabbani, M. F., Alboraih, A. M., and AlAbdulwahab, S. S. (2024). Effectiveness of family–professional collaboration on functional goals achievement of children with cerebral palsy and caregivers’ quality of life and burden: A randomized comparative study. J. Clin. Med. 13:4057. doi: 10.3390/jcm13144057
Alves, C. M. P., and Serralha, C. A. (2019). Repercussões emocionais em indivíduos que possuem irmãos com deficiência: Uma revisão integrativa. Contextos Clín. 12, 476–508. doi: 10.4013/ctc.2019.122.05
Al-Wardat, M., Magableh, H., Almhdawi, K. A., Yabroudi, M., Etoom, M., Tariah, H. A., et al. (2025). Parental quality of life and its predictors in Jordanian families with children with cerebral palsy. BMJ Paediatr. Open 9:e003462. doi: 10.1136/bmjpo-2025-003462
Amêndola, F., Oliveira, M. A., and Alvarenga, M. R. (2011). Influence of social support on the quality of life of family caregivers while caring for people with dependence. Rev. Escola Enfermagem USP 45, 880–885. doi: 10.1590/S0080-62342011000400013
Anjos, B. B., and Morais, N. A. (2021). As experiências de famílias com filhos autistas: Uma revisão integrativa da literatura. Ciências Psicol. 15, 38–59. doi: 10.22235/cp.v15i1.2347
Anjos, J. F., dos Santos, M. J. H., Ribeiro, M. T., and Moreira, S. (2019). Connor–Davidson resilience scale: Validation study in a Portuguese sample. BMJ Open 9:e026836. doi: 10.1136/bmjopen-2018-026836
Azevedo, T. L. D., Cia, F., and Spinazola, C. D. C. (2019). Correlação entre o relacionamento conjugal, rotina familiar, suporte social, necessidades e qualidade de vida de pais e mães de crianças com deficiência. Rev. Bras. Educ. Especial 25, 205–218. doi: 10.1590/s1413-65382519000200002
Benešová, P., and Sikorová, L. (2022). Evaluation of stress of parents of children with disability and without disability – Pilot study. Pielegniarstwo XXI Wieku / Nursing in the 21st Century 21, 102–105. doi: 10.2478/pielxxiw-2022-0018
Cardoso, ÉL. D. S., Santos, S. R. D., Araújo, Y. B. D., Neves, N. T. D. A. T., and Nascimento, J. A. D. (2021). Fatores associados à qualidade de vida de cuidadores de crianças e adolescentes com condições crônicas. Rev. Gaúcha Enfermagem 42:e20190318. doi: 10.1590/1983-1447.2021.20190318
Ceylan, A., and Demirdel, E. (2025). Investigation of psychological resilience and care burden of parents caring for children with special healthcare needs in Turkey: A cross-sectional study. J. Pediatric Nurs. 83, 106–113. doi: 10.1016/j.pedn.2025.04.022
Chen, H. J., Ko, M. H. J., Li, S. T., Chiu, N. C., and Hung, K. L. (2020). Prevalence of preschool children developmental disabilities in northeastern Taiwan – screening with taipei city developmental screening checklist for preschoolers, 2nd version. J. Formosan Med. Assoc. 119, 1174–1179. doi: 10.1016/j.jfma.2020.02.001
Chung, J. O. K., Li, W. H. C., Ho, L. L. K., and Cheung, A. T. (2023). The association of resilience with way of coping, psychological well-being and quality of life in parents of children with cancer. Intern. J. Environ. Res. Public Health 20:5765. doi: 10.3390/ijerph20105765
Cohen, J. (1988). Statistical power analysis for the behavioral sciences, 2nd Edn. Lawrence Erlbaum Associates.
Connor, K. M., and Davidson, J. R. T. (2003). Development of a new resilience scale: The connor–davidson resilience scale (CD-RISC). Dep. Anxiety 18, 76–82. doi: 10.1002/da.10113
Costa, E. M., Pinto, N. M., Fiúza, A. L., and Pereira, E. T. (2013). Paralisia cerebral e cuidado: O que muda na vida de quem cuida? Oikos: Rev. Bras. Econ. Doméstica 24, 237–265.
Costa, R. D. B., Costa, C. B. D., Mosmann, C. P., and Falcke, D. (2018). Experiências na família de origem que repercutem no clima familiar dos descendentes. Estudos Pesquisas Psicol. 18, 408–425.
Cunha, K. C., Costa, S. S., Pontes, F. A. R., da Silva, Pinto, D., and do Nascimento, R. G. (2019). Resiliência em mães de crianças com paralisia cerebral. Rev. CPAQV – Centro Pesquisas Avançadas Qual. Vida 11, 1–10. doi: 10.36692/cpaqv-v11n2-5
Duarte, A. C. M. L., Santos, J. N., and Camargos, A. C. R. (2022). Fatores associados à qualidade de vida dos cuidadores de crianças com transtornos do neurodesenvolvimento. Rev. Vozes Vales: Pub. Acad. 25, 1–24.
Duran, G. Ç, and Akpınar, H. (2022). The relationship between caregiver burden and psychological resilience among parents of children with disabilities. J. Health Sci. Med. 8, 564–571. doi: 10.32322/jhsm.1662323
Figueiredo, J. P. D., Cardoso, L. M., and Amorim, M. L. C. (2022). O perfil socioeconômico de mães de pessoas com deficiência. Res. Soc. Dev. 11:e500111436570. doi: 10.33448/rsd-v11i14.36570
Freitag, V. L., Milbrath, V. M., and Motta, M. D. G. C. D. (2020). Tornar-se mãe de uma criança com paralisia cerebral: Sentimentos vivenciados. Psicol. Estudo 25, 1–14. doi: 10.4025/psicolestud.v25i0.41608
Fruhling, M. T., Bravo, D. S., Gomes, M. F. P., Santos, M. S., Valverde, V. R. L., and Fracolli, L. A. (2022). Qualidade de vida de mães de crianças com deficiências físicas e mentais. Rev. Saúde Coletiva UEFS 12:e7771. doi: 10.13102/rscdauefs.v12i2.7771
García-Grau, P., Martínez-Rico, G., González-García, R. J., Escorcia-Mora, C. T., and Cañadas-Pérez, M. (2024). Caregiver burden and family quality of life in early intervention: The role of mothers and family confidence. Eur. J. Invest. Health Psychol. Educ. 14, 1325–1337. doi: 10.3390/ejihpe14050087
Hair, J. F., Black, W. C., Babin, B. J., and Anderson, R. E. (2019). Multivariate data analysis, 8th Edn. Boston, MA: Cengage Learning.
Iacob, C. I., Avram, E., Cojocaru, D., and Podina, I. R. (2020). Resilience in familial caregivers of children with developmental disabilities: A meta-analysis. J. Autism Dev. Disord. 50, 4053–4063. doi: 10.1007/s10803-020-04473-9
Izzo, F., Baiocco, R., and Pistella, J. (2022). Children’s and adolescents’ happiness and family functioning: A systematic literature review. Intern. J. Environ. Res. Public Health 19:16593. doi: 10.3390/ijerph192416593
Kim, J., Chae, H., and Kim, Y. (2024). Spousal support, parent–nurse partnership and caregiver burden among parents of children with chronic diseases: A cross-sectional study. J. Clin. Nurs. 33, 2649–2661. doi: 10.1111/jocn.16985
Lee, H., Kim, K., Kim, H., and Choi, E. K. (2025). Experiences of siblings of individuals with developmental disabilities: A meta-synthesis of qualitative studies. Disabil. Health J. 18:101770. doi: 10.1016/j.dhjo.2024.101770
Lemos, B. C. (2015). Resiliência em mulheres cuidadoras de crianças com paralisia cerebral. Dissertação de mestrado, Universidade Federal do Ceará, Brasil: Repositório Institucional da UFC.
Londero, A., Van Hoogstraten, A. M. R. K. J., Souza, A. P., Rechia, I., and Franco, V. (2021). Adaptação parental ao filho com deficiência: Revisão sistemática da literatura. Interação Psicol. 25, 240–255. doi: 10.5380/riep.v25i2.60759
Masten, A. S. (2007). Resilience in developing systems: Progress and promise as the fourth wave rises. Dev. Psychopathol. 19, 921–930. doi: 10.1017/S0954579407000442
Mestre, T. D., Lopes, M. J., Mestre, D. M., Ferreira, R. F., Costa, A. P., and Caldeira, E. V. (2024). Impact of family-centered care in families with children with intellectual disability: A systematic review. Heliyon 10:e28241. doi: 10.1016/j.heliyon.2024.e28241
Mundakir, M., Choliq, I., Sukadiono, S., Fitriyani, V. R., and Firman, F. (2024). Caregiving experiences among parents of children with physical and intellectual disabilities: A qualitative systematic review. J. Ners. 19:378. doi: 10.20473/jn.v19i3.55282
Muthukaruppan, S. S., Cameron, C., Campbell, Z., Krishna, D., Moineddin, R., Bharathwaj, A., et al. (2022). Impact of a family-centred early intervention programme in South India on caregivers of children with developmental delays. Disabil. Rehabil. 44, 2410–2419. doi: 10.1080/09638288.2020.1836046
Park, E. Y. (2023). Longitudinal changes in the parenting stress of mothers of children with cerebral palsy and their relationship with children’s gross motor function system levels. Healthcare 11:1317. doi: 10.3390/healthcare11091317
Paul, S., Nahar, A., Bhagawati, M., and Kunwar, A. J. (2022). A review on recent advances of cerebral palsy. Oxid. Med. Cell. Long. 2022:2622310. doi: 10.1155/2022/2622310
Pemau, R. C., González-Palacios, P., and Kerr, K. W. (2024). How quality of life is measured in studies of nutritional intervention: A systematic review. Health Qual. Life Outcomes 22:9. doi: 10.1186/s12955-024-02229-y
Poojari, D. P., Umakanth, S., Maiya, G. A., Rao, B. K., Khurana, S., Kumaran, D. S., et al. (2024). Effect of family-centered care interventions on well-being of caregivers of children with cerebral palsy: A systematic review [version 2; peer review: 2 approved]. F1000Research 12:790. doi: 10.12688/f1000research.133314.2
Ribeiro, M. F. M., Porto, C. C., and Vandenberghe, L. (2013). Estresse parental em famílias de crianças com paralisia cerebral: Revisão integrativa. Ciência Saúde Coletiva 18, 1705–1715. doi: 10.1590/S1413-81232013000600022
Rodríguez, D. I. L., Pedraza, B. D. L. ÁP., and García, K. P. V. (2022). Calidad de vida en padres de hijos con discapacidad neuromusculoesquelética. Eur. J. Health Res. 8, 1–14. doi: 10.32457/ejhr.v8i1.2075
Rosenbaum, P., Paneth, N., Leviton, A., Goldstein, M., Bax, M., Damiano, D., et al. (2007). A report: The definition and classification of cerebral palsy April 2006. Dev. Med. Child Neurol. 49, 9–14. doi: 10.1111/j.1469-8749.2007.tb12610.x
Rurka, M. M., Suitor, J. J., Gilligan, M., and Frase, R. T. (2023). How do own and siblings’ genders shape caregivers’ risk of perceiving care-related criticism from siblings? J. Gerontol. Series B 78, 520–531. doi: 10.1093/geronb/gbac188
Santos, S. V. (2011). Índice de stress parental – versão reduzida (versão portuguesa do Parenting Stress Index – Short Form). Lisboa: CEGOC-TEA.
Silva, D. B. R., Pfeifer, L. I., and Funayama, C. A. R. (2010). GMFCS-E&R: Sistema de classificação da função motora grossa – ampliado e revisto. São Paulo.
Silva, ÍD. C. P. D., Cunha, K. D. C., Ramos, E. M. L. S., Pontes, F. A. R., and Silva, S. S. D. C. (2019). Estresse parental em famílias pobres. Psicol. Estudo 24:e40285. doi: 10.4025/1807-0329e40285
Staunton, E., Kehoe, C., and Sharkey, L. (2020). Families under pressure: Stress and quality of life in parents of children with an intellectual disability. Irish J. Psychol. Med. 40, 192–199. doi: 10.1017/ipm.2020.4
Stratton, P., Bland, J., Janes, E., and Lask, J. (2010). Developing an indicator of family function and a practicable outcome measure for systemic family and couple therapy: The SCORE. J. Fam. Therapy 32, 232–258. doi: 10.1111/j.1467-6427.2010.00507.x
Sulaimani, G. H., Kamel, S., Alotaibi, G., Telmesani, N., and Kamel, S. Jr. (2023). Quality of life among family caregivers of disabled children in Saudi Arabia. Cureus 15, e41320. doi: 10.7759/cureus.41320
The WHOQOL Group (1995). The world health organization quality of life assessment (WHOQOL): Position paper from the World Health Organization. Soc. Sci. Med. 41, 1403–1409. doi: 10.1016/0277-9536(95)00112-K
Turnage, D., Conner, N., Hinojosa, M., Xie, R., Nguyen, T., Edwards, J., et al. (2025). Stress, coping, and quality of life of parents of children with autism. J. Autism Dev. Disord. doi: 10.1007/s10803-025-07043-z [Epub ahead of print].
Vaz-Serra, A., Canavarro, M. C., Simões, M. R., Pereira, M., Gameiro, S., Quartilho, M. J., et al. (2006). Estudos psicométricos do instrumento de avaliação da qualidade de vida da Organização Mundial de Saúde (WHOQOL-100) para português de Portugal. Psiquiatria Clín. 27, 31–40.
Vilaça, M., Silva, J. T., and Relvas, A. P. (2014). “Systemic clinical outcome routine evaluation: SCORE 15,” in Avaliação familiar: Funcionamento e intervenção, Vol. 1, ed. A. P. Relvas (Brazil: Quarteto Editora), 23–41.
Wang, Z., Yu, S., Liu, Y., Han, Y., Zhao, W., and Zhang, W. (2024). Effectiveness of family-centred interventions for family caregivers: A systematic review and meta-analysis of randomized controlled trials. J. Clin. Nurs. 33, 1958–1975. doi: 10.1111/jocn.17091
WHOQOL Group (1994). “The development of the World Health Organization quality of life assessment instrument (the WHOQOL),” in Quality of life assessment: International perspectives, eds J. Orley and W. Kuyken (Springer), 41–60. doi: 10.1007/978-3-642-79123-9_4
World Health Organization Quality of Life Group (1998). The World Health Organization quality of life assessment (WHOQOL): Development and general psychometric properties. Soc. Sci. Med. 46, 1569–1585. doi: 10.1016/S0277-9536(98)00009-4
Xia, C., Wei, T., Tang, Q., Zheng, H., Sun, M., Chen, G., et al. (2023). Anxiety, depression, quality of life, and family support among family caregivers of children with disabilities. Intern. J. of General Med. 16, 5063–5075. doi: 10.2147/IJGM.S434900
Ximenes, V. S., Queluz, F. N. F. R., and Barham, E. J. (2022). Relação e entre habilidades sociais, suporte social e qualidade de vida em cuidadores. Psico-USF 27, 115–127. doi: 10.1590/1413-82712022270109
Yildirim, M., Yayan, E. H., Dağ, Y. S., Sülün, A., and Akyay, A. (2022). The relationship between the care burden and quality of life of parents who have children with hematological problems and their perceived social support. J. Pediatric Nurs. 63, e107–e112. doi: 10.1016/j.pedn.2021.10.004
Keywords: caregivers, Cerebral Palsy, family functioning, parental stress, quality of life, resilience
Citation: Sotero L, Fernandez FAF, Bezerra PS, Queiroz JM, Pontes FAR and Silva SSC (2026) Resilience, parental stress, and family functioning associated with quality of life: a study with caregivers of children and adolescents with Cerebral Palsy. Front. Educ. 10:1671097. doi: 10.3389/feduc.2025.1671097
Received: 22 July 2025; Revised: 07 December 2025; Accepted: 08 December 2025;
Published: 12 January 2026.
Edited by:
Dolores María Peñalver García, University of Murcia, SpainReviewed by:
Antonia Cascales-Martinez, University of Murcia, SpainAli Ceylan, Karamanoğlu Mehmetbey University, Türkiye
Carmen M. Gómez Navarro, University of Murcia, Spain
Copyright © 2026 Sotero, Fernandez, Bezerra, Queiroz, Pontes and Silva. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
*Correspondence: Patrícia da Silva Bezerra, cGF0cmljaWFzaWx2YWJzQGdtYWlsLmNvbQ==