Psychosocial and caregiving challenges of mothers of children with disabilities in Iran: a qualitative study

Abstract

Introduction

Mothers of children with disabilities (CWD) face multiple psychological, social, and caregiving challenges that can negatively affect their mental health and quality of life. This study aims to explore the psychological, social, and caregiving challenges experienced by mothers of CWD in Iran.

Methods

A qualitative approach using Graneheim and Lundman’s conventional content analysis was employed to systematically analyze participants’ experiences and extract meaningful categories. Twenty-six mothers of children with cognitive or functional disabilities, fluent in Persian and willing to participate, were purposefully selected and interviewed through semi-structured interviews at Modarres Hospital, Saveh, Iran.

Findings

Analysis revealed four main categories of challenges: silent burnout, self-neglect in the path of motherhood, placement on the island of helplessness, and the uncertain path of treatment. These reflect psychological strain, social isolation, multiple responsibilities, and difficulties navigating treatment services.

Conclusion

Mothers of CWD in Iran face significant psychological, social, and caregiving burdens, including anxiety, depression, role conflict, weak social support, and difficulties accessing treatment services, which can lead to reduced quality of life and burnout. Interventions focusing on strengthening social support, facilitating access to care, and providing counseling and stress-management strategies are essential to alleviate these burdens.

Introduction

Child disability is a major health challenge around the world and may include physical, cognitive, relational, social, or mental disorders. It refers to a state where a child faces limitations in physical, cognitive, sensory, or mental functioning, which reduce the ability to perform daily activities. Reports show that around 15% of the global population has a disability [1, 2]. Estimates indicate that there are nearly 93 million 0–14 year-old children with disability (CWD) around the world [3] and more than 1.166 million CWD in Iran [4].

CWD suffer from various physical, cognitive, emotional, and social problems. They experience limitations in daily activities, learning, social relationships, and group activities. Disability may lead to educational decline, mental problems like anxiety and depression, social isolation, and dependence on caregivers [5, 6]. Most CWD need specific medical and educational services. For example, a study showed that 15%–33% of CWD in developed countries had specific care-related needs, which not only affected their quality of life but also placed a heavy strain on support and healthcare systems [7].

The major part of caregiving for CWD falls to their families, particularly their mothers. As the main caregivers, mothers have different responsibilities like daily caregiving, pursuing treatments, attending educational sessions, and providing mental support [8]. These responsibilities may be extremely complex and time-consuming, leading to various problems like burnout, chronic fatigue, social isolation [9], low quality of life, and mental disorders [10]. Studies revealed that these mothers suffer from negative emotions, anxiety over the future, burnout, poor perceived support [11], mental strain, limited access to specialized services [9], heavy caregiving burden, high levels of stress, and low quality of life [12]. A study also reported that more than 66% of the mothers of CWD suffered from anxiety and depression symptoms [13].

Despite extensive research on the maternal consequences of caregiving for CWD, significant knowledge gaps remain regarding the psychological, social, and caregiving challenges of these mothers, particularly in Iran. Therefore, understanding these challenges requires an in-depth exploration of mothers’ lived experiences. A qualitative approach was chosen for this study because it allows capturing the complexity of mothers’ experiences and provides rich insights into their psychological, social, and caregiving challenges, which quantitative methods may not fully reveal.

Thus, we conducted the current study to explore the psychological, social, and caregiving challenges of the mothers of CWD.

Methods

The qualitative design of the study allowed for a broader exploration of participants’ experiences.

Research design and setting

This qualitative study was conducted in 2024 through conventional content analysis. The interviews were conducted by the first author, a male PhD nurse with experience in qualitative research, who had no prior relationship with the participants. The study was reported following the COREQ (Consolidated Criteria for Reporting Qualitative Research) checklist to ensure transparency and rigor. Study setting was Modarres hospital in Saveh, Iran, and participants were the mothers of children with mental or functional disabilities.

Population and sample

The study population consisted of mothers of children with cognitive or functional disabilities. Sampling criteria were agreement to participate, fluency in Persian, having a child with cognitive or functional disabilities (such as visual, hearing, or motor disabilities), being married, and willingness to share experiences in depth. Mothers who were unwilling to stay in the study were excluded. Maximum variation was ensured by selecting participants from different sociodemographic groups. To account for potential differences in experiences related to child age, we purposefully included mothers of children across a wide age range (3 months to 12 years). Theoretical sampling was not used because our aim was to achieve maximum variation rather than theory development. This allowed us to capture diverse perspectives and adaptive strategies associated with different developmental stages.

Research instrument

The interview guide of the study was developed using insights from pilot interviews and included six main questions to explore participants’ experiences:

1. “Can you describe a typical day caring for your child?”

2. “How did your life change after the birth of a child with disability?”

3. “What challenges did you experience while caregiving for your child?”

4. “How has being a mother affected your personal life and daily routines?”

5. “Can you describe your experience in finding and accessing appropriate services or treatment for your child?”

6. “Looking back, what are the most important challenges you have experienced as a mother of a child with disability, and what advice would you give to other mothers in a similar situation?”

Probing questions such as “Can you explain more about this?” were used to explore participants’ experiences in more depth.

Data were collected through personal semi-structured interviews held at a private place based on participants’ preferences. All interviews were audio-recorded with participants’ consent and lasted approximately 40 to 55 min. Interviews continued until data saturation was reached.

Data analysis

Data analysis was performed concurrently with data collection using Graneheim and Lundman’s conventional content analysis [14]. The steps included: transcribing interviews verbatim, reading transcripts multiple times to gain a general understanding, identifying meaning units, coding the meaning units, grouping codes into categories, and deriving themes from categories. After transcribing the interviews, the data were coded and analyzed using MAXQDA 10 software [14]. Meaning units were identified and coded, and the codes were grouped into categories. To ensure inter-coder reliability, two researchers independently coded the interviews and discussed discrepancies until consensus was reached. Participants’ non-verbal cues during interviews were also considered during data analysis to better understand participants’ latent emotions and feelings. Current data collection and analysis enabled continuous, precise exploration of the hidden aspects of participants’ experiences.

Rigor

To minimize researcher bias, reflexive journals were maintained and peer debriefing sessions were conducted. The first author continuously reflected on his own perspectives and potential influence on data collection and analysis, enhancing reflexivity throughout the study. Trustworthiness was ensured using Lincoln and Guba’s four criteria: credibility, dependability, confirmability, and transferability [15]. Credibility was ensured through prolonged engagement with the data and member checking. Confirmability and transferability were strengthened by precisely documenting both data and analyses.

Ethical considerations

This study received ethical approval from the Ethics Committee of Saveh School of Medical Sciences, Saveh, Iran. The aim of the study was explained to participants, the time and place of the interviews were set based on their preferences, and verbal and written informed consents were obtained from all of them. To ensure privacy and confidentiality, participants’ identities and their children’s information were anonymized, and data were securely stored. The interview environment was arranged to be private and comfortable, and participants were reminded that they could pause or stop the interview at any time. Care was taken to minimize emotional distress; when participants showed sadness or cried during the interviews, the researcher provided empathetic support, allowed breaks, and offered the option to continue later. Participants were also informed about counseling resources available if they wished to seek further emotional support.

Findings

Twenty-six mothers of CWD from different socioeconomic and educational groups participated in this study. The mean of their age was 33.19 ± 7.98 years, and 50% of them were housewife, while the rest were engaged in various occupations. In terms of educational level, the highest frequency was related to mothers with a diploma or less, and a smaller percentage had university education. Other demographic characteristics of the mothers are presented in Table 1. Their psychological, social, and caregiving challenges were grouped into ten subcategories and four main categories, namely silent burnout, self-neglect in the path of motherhood, placement on the island of helplessness, and the uncertain path of treatment (Table 2).

Table 1.

Participants’ characteristics

No.	Age (Years)	Occupation	Educational level	Child’s age
1	35	Housewife	Elementary	1 year
2	27	Employee	Bachelor’s	3 years
3	22	Nurse	Bachelor’s	10 months
4	41	Housewife	Diploma	1.5 years
5	28	Seller	Elementary	1 year
6	36	Housewife	Elementary	12 years
7	27	Teacher	Bachelor’s	6 months
8	38	Housewife	Diploma	10 years
9	23	Housewife	Elementary	3 years
10	47	Counselor	Associate diploma	5 years
11	25	Housewife	Illiterate	4 months
12	30	Employee	Bachelor’s	8 years
13	33	Housewife	Elementary	2 years
14	39	University instructor	PhD	1 year
15	27	Operating room technician	Bachelor’s	2 years
16	29	Housewife	Diploma	3.5 years
17	39	Housewife	Illiterate	9 years
18	42	Employee	Diploma	7 years
19	25	Housewife	Bachelor’s	3 months
20	33	Laborer	Diploma	3 years
21	47	Housewife	Secondary	11 years
22	26	Student	Diploma	4 months
23	49	Employee	Bachelor’s	11 years
24	24	Employee	Master’s	2.5 years
25	31	Housewife	Bachelor’s	4 years
26	40	Housewife	Bachelor’s	1 year

Table 2.

The categories and subcategories of the psychological, social, and caregiving challenges of the mothers of children with disability

Categories	Subcategories
Silent burnout	Chronic anxiety and endless suffering
	Physical and mental fatigue
	Financial concerns
Self-neglect in the path of motherhood	Being trapped in the caregiving role
	Role conflict
	Inattention to personal needs
Placement on the island of helplessness	Disappointment
	Lack of social support
Uncertain path of treatment	Informational uncertainty
	Difficulty finding specialized services

Silent burnout

This category emerged as the central concept of the study, encompassing multiple dimensions of mothers’ experiences and reflecting the broader psychological, social, and caregiving challenges that are also evident in the other categories. Latent caregiving strains, constant concerns, and endless responsibilities affect mothers in many ways. They often struggle to meet all the needs of their children, while increasing financial strains add further pressure. These challenges lead to mental fatigue, place stress on both their bodies and minds, disturb their concentration and sense of peace, and make anxiety and apprehension a constant part of their daily lives. These problems put mothers at risk for gradual and silent burnout and negatively affect all aspects of their lives. The three subcategories of this category were chronic anxiety and endless suffering, physical and mental fatigue, and financial concerns. These aspects are further detailed in the following subcategories, illustrating how mothers experience silent burnout in daily life.

Chronic anxiety and endless suffering

One of the first and most significant manifestations of silent burnout is chronic anxiety and endless suffering. Anxiety is one of the most common problems among the mothers of CWD. Constant concerns over their children’s mental health and future cause chronic stress, and treatment-related and financial problems add to this stress. These problems gradually turn into a constant mental suffering, disturb their peace, negatively affect their quality of life, cause them a sense of frustration and inefficiency, and spoil their life enjoyment. For example, participants described their constant worries as follows.

“I’m always worried about my potential inability to give proper care for my child. I’m always preoccupied with the possibility of losing my child or the aggravation of his conditions” (P. 5).

“I feel that every decision I make for my child carries the weight of the world on my shoulders, and I am always worried that I might not be able to improve their situation or handle their challenges” (P. 8).

Thus, chronic anxiety creates a persistent mental burden, affecting mothers’ peace and overall quality of life.

Physical and mental fatigue

Alongside chronic anxiety, mothers also face physical and mental fatigue, which further exacerbates the impact of silent burnout. Daily stressors, constant concerns, and persistent preoccupation with caregiving tasks reduce mothers’ ability to concentrate even on simple daily affairs, cause them forgetfulness, reduce their ability to perform their daily responsibilities and control their life, lead to physical and mental fatigue, and negatively affect their quality of life and mental health. Therefore, they may feel frustrated and unable to manage their daily activities.

“Some days I don’t know how to start. I’m always tired, my body is full of pain, and I’m so preoccupied that I forget even simple things” (P. 17).

“Every day with my child feels like I lose a part of my strength. My mind is full of worries, and even simple tasks demand a mountain of energy” (P. 21).

These experiences show that persistent mental and physical exhaustion significantly reduces mothers’ capacity to manage daily life.

Financial concerns

In addition to mental and physical fatigue, financial concerns represent another critical dimension of silent burnout. The mothers of CWD always suffer from and are preoccupied with financial concerns. They are worried about their inability to afford the costs of their children’s education and treatment. Financial strains and concerns not only disturb their concentration but also give them a sense of insecurity, cause them stress, negatively affect their mental peace, reduce their ability to manage daily challenges, and impose a heavy mental burden on them.

“My mind is constantly occupied with whether I will be able to cover the costs of my child’s treatment and education, and this worry sometimes weighs so heavily that I cannot think peacefully for even a moment” (P. 20).

“This financial worry is always with me, like a shadow cast over my life that won’t let me breathe” (P. 1).

Financial stress not only disrupts mothers’ peace but also intensifies the overall mental burden and daily challenges.

Self-neglect in the path of motherhood

Building on the burnout experienced by mothers, another important consequence is self-neglect in the path of motherhood. Caregiving to CWD is so challenging and time-consuming that mothers need to allocate most of their time to caregiving. Meanwhile, they need to perform their spousal, familial, and occupational roles, which impose added pressure on them and cause them role ambiguity and conflict. These conditions require them to gradually ignore themselves, their feelings, and their needs. The subcategories of this category were being trapped in the caregiving role, role conflict, and inattention to personal needs. These multiple pressures can be further understood through three specific experiences, each highlighting unique challenges and consequences.

Being trapped in the caregiving role

For most mothers of CWD, the caregiving role gradually evolves into their primary identity, superseding others aspects of their personality. Therefore, they may gradually replace their maternal identity with caregiving identity and pay limited attention to the other aspects of their personality. They may define themselves as the “mother of a disabled child” rather than an independent person. This redefinition reflects their trap in a unidimensional role. These mothers may feel that their life is organized completely around their children’s needs and thereby, feel a state of identity freeze, where the caregiving role overwhelms other aspects of identity. Consequently, they can no longer focus on their interests, have few opportunities for personal development, and feel trapped in an endless cycle.

“I’m mostly focused on my child care. I can’t even remember my prior self-expectations, and sometimes I feel my entire being is immersed in this role” (P. 24).

“As each day passes, I feel more and more that my life revolves entirely around my child’s needs, and there is no moment left that belongs solely to me” (P. 6).

This experience shows that mothers lose significant aspects of their personal identity and become trapped in a limited caregiving role.

Role conflict

In addition to being trapped in the caregiving role, managing multiple roles simultaneously creates added pressure and conflict. The mothers of CWD mostly need to perform different roles at the same time, including maternal, spousal, housekeeping, occupational, and caregiving roles. Sometimes, these multiple roles interfere with each other and cause problems for mothers because they need to allocate their time, energy, and attention to these different roles, while the needs of their CWD usually consume most of their resources. Their inability to effectively perform their multiple conflicting roles causes them strain, fatigue, frustration, and failure.

“Sometimes, I feel I don’t properly perform any of my roles. I need to be a mother and a wife, but it seems there is always a failure” (P. 14).

“It feels like I’m walking on several paths at the same time, trying to cover them all, yet I never feel like I’ve truly reached any destination” (P. 23).

This subtheme demonstrates that juggling multiple roles leads to stress, fatigue, and a sense of failure among mothers.

Inattention to personal needs

Alongside role conflict, mothers often have little opportunity to attend to their personal needs. The mothers of CWD are usually so involved in caregiving to their children that they may have no opportunity to rest, do recreational activities, or pay attention to their feelings. They may gradually feel compelled to ignore most of their personal desires and interests, and may feel that they are detached from their own identities and are restricted to caregiving to their children.

“My life has been overwhelmed by my child’s needs. I can’t perform my favorite things” (P. 10).

“I feel like my life is entirely consumed by caring for my child, leaving no moment or space for myself to have even a little time for my own needs or to do the things I used to enjoy” (P. 9).

This experience shows that mothers neglect their personal desires and feel disconnected from their own identity.

Placement on the Island of helplessness

Building on the challenges of silent burnout and self-neglect, mothers often find themselves facing a deeper sense of helplessness in their caregiving journey. Mothers shoulder the major part of the responsibility of caregiving to CWD and attempt to manage all care-related tasks alone. This causes them fatigue and burnout over time. The absence of strong family, peer, and social support may foster feelings of loneliness and helplessness, which can lead to disappointment and diminish their motivation to seek help. The two subcategories of this category were disappointment and lack of social support.

Disappointment

A major source of mothers’ helplessness is their disappointment with the support systems. The inefficiency of the healthcare and support systems may cause disappointment and frustration for the mothers of CWD. They may receive limited services and support from these systems despite their great efforts to receive services and support. Complex administrative bureaucracies, lack of resources, and inattention to the specific needs of their CWD impose significant mental burden, aggravate their disappointment and frustration, cause them anxiety, and give them a sense of helplessness.

“Our healthcare system never fulfills our needs timely and completely And this makes me feel helpless, and my fatigue grows even heavier” (P. 5).

“Every time I try to seek help, I face obstacles and lack of resources; I feel like no one cares about us, and despair engulfs my entire being” (P. 2).

This experience highlights how systemic inefficiencies intensify mothers’ frustration and feelings of helplessness.

Lack of social support

Following disappointment, mothers also face the challenge of insufficient social support, which further increases their sense of isolation. The mothers of CWD often feel that they are alone in the path of caregiving to their children and nobody appropriately understands their conditions. They receive limited emotional and practical support from their families, peers, and community, and hence, experience heavy mental strain. The lack of support creates feelings of social isolation, helplessness, and frustration, leaving them without a reliable way to communicate their concerns or receive help.

“I’m always with my child. My husband goes to his work and I have to take him to school or feed him” (P. 1).

“Sometimes when I look around, I see everyone busy with their own lives, while I am left here with all my pain and worries, as if there is no one to walk beside me” (P.4).

Overall, insufficient social support leaves mothers isolated, mentally burdened, and struggling to cope with caregiving demands.

Uncertain path of treatment

Beyond the psychosocial challenges, mothers also encounter significant difficulties in navigating the treatment process. Mothers’ limited access to information adds to their stress and powerlessness and turns the treatment process into a tiresome experience. Poor collaboration among different healthcare departments and challenges in locating specialized care services complicate the treatment process, waste mothers’ time and energy, and heighten their fatigue and frustration. Therefore, instead of reducing the problems of CWD and their mothers, treatment may create additional challenges and prevent mothers from finding effective solutions. These problems negatively affect their mental health and reduce their access to effective treatments for their children. The subcategories of this category were informational ambiguity and difficulty finding specialized services.

Informational uncertainty

One of the main sources of difficulty in this uncertain path of treatment is the lack of clear and reliable information. The mothers of CWD face contradictory and incomplete information in the process of their children’s treatment, which causes them bafflement and ambiguity and limits their access to services. These mothers usually feel disappointed due to their limited knowledge about where to start the course of their children’s treatment and how to receive specialized services. This informational ambiguity makes them spend a great deal of time seeking resources, without reaching a satisfactory response.

“I face a new question instead of a response wherever I refer for my child’s treatment and the treatment process becomes even more confusing for me” (P. 7).

“All the treatment centers say I should start the therapy sooner, but no one explains where to begin or which path is right; this uncertainty wears me out even more than the illness itself” (P. 11).

In summary, unclear and conflicting information intensifies mothers’ confusion and prevents them from accessing timely and appropriate care for their children.

Difficulty finding specialized services

In addition to unclear information, mothers face practical obstacles in accessing the specialized services their children need. Most mothers of CWD suffer from a shortage of specialized care centers and specialists to fulfill their children’s healthcare-related needs. Therefore, they need to spend a great amount of time finding necessary healthcare services. Moreover, poor coordination among various healthcare centers creates additional difficulties for them as they need to refer to multiple places to receive necessary services, leading to great physical and mental exhaustion. These problems postpone treatments, cause mothers to feel trapped in an endless and arduous cycle, give them a sense of inability and disappointment, and make the process of child’s treatment more complex and arduous.

“The more I search, the fewer facilities I can find that provides all the necessary services for my child. I have to refer to several places for each trivial thing” (P. 13).

“Every time I think I’ve found the right path, I still encounter a lack of specialized services or uncoordinated centers, and the treatment gets delayed” (P. 9).

Overall, the shortage of specialized care and poor system coordination deepens mothers’ frustration, prolongs the treatment journey, and leaves them mentally and physically drained.

Discussion

This study explored the psychological, social, and caregiving challenges of the mothers of CWD. The first category of these problems was silent burnout, with chronic anxiety and endless suffering as one subcategory. Participants reported continuous and progressively increasing anxiety due to their concerns about their children’s health, uncertain future, and unpredictable life challenges. These findings align with stress theory, which posits that continuous exposure to caregiving demands without adequate resources can lead to psychological strain and burnout [16]. Consistent with this finding, Wahab and Ramli [17] and Greeshma [18] reported that more than 80% of the mothers of CWD experienced severe mental strain and were at high risk for depression [17, 18]. These problems, which are mainly due to the lack of family and social support, continuous caregiving strains, and exclusive caregiving roles, can weaken mothers’ mental resources and lead to their mental health degradation [19]. The mothers of CWD usually experience greater stress than fathers due to their greater interactions with their children and their more active role in child care, and hence, are at great risk for poor mental health, altered resilience, and social isolation [20].

Physical and mental fatigue was the second subcategory of silent burnout in the present study. Participants reported severe fatigue, disturbed concentration, low motivation, and poor cognitive functioning due to caregiving for their CWD. In agreement with this finding, Yarar et al. [21] and Kara et al. [22] reported apparent cognitive functioning decline, severe physical and mental fatigue, and poor concentration among the mothers of CWD [21, 22]. The main reasons for fatigue among these mothers include poor sleep, prolonged nighttime wakefulness, continuous caregiving burden, and poor social support [23]. These problems create conflicts between personal life and caregiving roles and put mothers in a confused mental state that impairs decision making, weakens interpersonal relationships, and reduces the ability to perform familial roles [24].

Study findings also showed financial strains as the third subcategory of silent burnout. Most participants reported the heavy costs of their children’s treatment and rehabilitation and considered their inability to afford these expenses as a key factor contributing to their financial anxiety. Similarly, Lakhani et al. [25] and Sakwape et al. [26] highlighted that financial strains can lead to failure and helplessness among mothers, particularly in low- to moderate-income families [25, 26]. These financial pressures among these mothers are usually due to weak insurance support, lack of special subsidies, and limited access to free support services [27], and can lead to poor family well-being, child deprivation of the necessary services, sense of guilt among mothers, and aggravation of their mental strain [28]. Unlike our findings, Matthews et al. [29] reported great resilience and effective coping strategies among the mothers of CWD [29]. This contradiction may stem from factors such as better access to support resources and well-designed social service systems, which alleviate mothers’ burnout and offer them a chance to recover [30].

Self-neglect in the path of motherhood was the second category of the study. Being trapped in the caregiving role was one of the subcategories of this category. Caregiving to CWD demands mothers’ complete time and energy, causes them to ignore their own autonomy, negatively affects all aspects of their identity, and limits their personal growth. Lee et al. [31] reported that these mothers were deeply immersed in caregiving to their children and thereby, experienced great mental strain and were at risk for identity loss [31]. Some mothers of CWD prioritize child care so intensely that they neglect themselves in the process of child care [32] and lose their personal identity [33]. These outcomes of child care are mainly due to child’s extensive care-related needs, lack of social support for mothers, great strain of familial and caregiving roles, and lack of opportunities for recovery [34, 35], and cause bafflement, dissatisfaction, and serious mental problems such as depression and anxiety for mothers [36].

Role conflict was the second subcategory of self-neglect in the path of motherhood. We found that participants had multiple maternal, spousal, and occupational roles. Sometimes, they faced conflicts among their roles and could not effectively perform all their responsibilities, resulting in feelings of failure and fatigue. The mothers of physically dependent children need to perform multiple roles and hence, may face role conflict and pressure [37–39]. The observed conflicts between maternal, spousal, and occupational roles are consistent with role conflict theory, highlighting the stress arising when individuals are required to fulfill incompatible responsibilities simultaneously [40]. On the other hand, their limited time and energy seriously affect their ability to perform their multiple roles, leading to mental fatigue, dissatisfaction with self and life, interpersonal problems, and a sense of guilt [41, 42].

The third subcategory of self-neglect in the path of motherhood was inattention to personal needs. Findings indicated that the mothers of CWD usually ignore their personal needs, particularly when there is a heavy caregiving burden. Such inattention can affect their identity and lead to chronic fatigue. Similarly, Greeshma [18] and Herba [41] showed that children’s need for constant care compelled most mothers to ignore their personal needs [18, 41]. Time strain due to constant care provision to CWD and limited opportunity to engage in recreational or occupational activities require mothers to ignore their personal needs, leading to personal dissatisfaction, mental strain, sorrow, and depression [43]. In contrast, Gökçek & Boyacıoğlu [44] and Ercan et al. [45] reported that the mothers of CWD become stronger in different aspects of life [44, 45]. Moreover, Beighton & Wills [46] showed that child care enabled parents to show their love for their children and helped them feel that child care made them better humans [46].

Placement on the island of helplessness was the third main category of the study, with disappointment forming one of its subcategories. The mothers of CWD feel that healthcare and support systems do not provide effective and timely response to their needs, and this gives them a sense of frustration and inability. In line with this finding, Zulfia [2] found that mothers experienced disappointment due to delays in healthcare services and dissatisfaction with the quality of the services [2]. These mothers usually suffer from disappointment and anxiety due to limited medical and social support [47], inefficient healthcare services, administrative complexities, resource shortages [48], poor access to specialized treatments, and lack of governmental support [49]. Disappointed mothers may experience added mental strain, have a lower ability to manage their problems, have no motivation to seek help, distance themselves from others, and thereby, experience social isolation. Their conditions significantly reduce their quality of life and may lead to severe mental problems such as depression [38, 50].

Lack of social support was the second subcategory of placement on the island of helplessness. Findings showed that the mothers of CWD felt alone and unsupported, particularly when their children needed specialized care. Similarly, Rfat et al. [51] reported that a weak support network aggravated the mental and social problems of the mothers of CWD [51]. Özsavran et al. [52] highlighted that these mothers need strong social support to better cope with their caregiving challenges [52]. Poor support for these mothers in some cultures may be due to factors like peers’ and families’ limited awareness of their conditions and needs [53, 54]. Mothers with a poor support system experience serious mental and social strains, which undermine their quality of life, physical and mental health, and resilience [34]. In contrast Alsa et al. [55] reported that despite their difficult conditions, the mothers of CWD were able to effectively use coping strategies to manage their caregiving and mental challenges, probably due to their better access to the sources of support or their strong family support network [55]. Fu et al. (2023) also showed that mothers in cultures with strong social support better managed their mental strains and thereby, less frequently experienced helplessness. These findings highlight the necessity of efficient support systems to reduce mothers’ mental problems [56]. Recent qualitative evidence also suggests that remote psychosocial interventions, such as online parenting or infant-care classes, can effectively enhance mothers’ wellbeing and reduce psychological distress [57].

Uncertain path of treatment was the last category of the present study, with informational uncertainty as one of its subcategories. Participants reported that they had limited information about the available services and how to access them, and highlighted the lack of reliable sources of information. Several previous studies also reported the same findings. For example, Jabour [58] reported that one of the leading causes of informational uncertainty was the lack of a coherent medical and supportive information system [58]. Hamzah et al. [59] found that the mothers of children with hearing loss faced serious bafflement in the process of treatment due to inadequate sources of information [59]. Moreover, Mkabile et al. [60] highlighted that accessible support services, like education and counseling, can prevent the bafflement of the caregivers of CWD [60]. The lack of reliable education and information requires the mothers of CWD to rely on unreliable sources of information, which in turn increases their mental strain, anxiety, and sense of inability [61, 62]. Therefore, multidimensional interventions are essential to coordinate services and information and thereby reduce families’ mental burden [63].

The second subcategory of the uncertain path of treatment was difficulty finding specialized services. According to the Stress Process Model, prolonged caregiving under conditions of insufficient support and limited access to services significantly increases mental strain and the risk of burnout among mothers [64]. Most participants complained of the difficulties locating specialized care centers, coupled with heavy costs, poor insurance coverage, and prolonged waiting time to receive these services. These difficulties not only disrupt the process of treatment, but also aggravate disappointment among families. Similar to our findings, Graaf et al. [65] showed inadequate insurance coverage and fragmented specialized care services as the contributing factors to dissatisfaction among the families of children with special healthcare needs [65]. Ataro Adere et al. [66] revealed that parents in African countries faced numerous challenges due to the lack of a clear path to access specialized services [66]. These difficulties are mainly due to weak support infrastructures, shortage of specialized workforce in healthcare centers, and lack of an efficient referral system. Their main outcomes include delayed diagnosis and treatment, aggravation of children’s problems, mothers’ mental fatigue, increased socioeconomic costs of families, and caregiver burnout [67, 68]. On the other hand, mothers in some countries like Britain reported a positive experience of rapid and easy access to specialized services [69]. Parents in areas with well-structured healthcare systems usually receive adequate information [70]. These findings imply that the availability of coherent infrastructures and effective referral systems has pivotal role in facilitating access to specialized services [71].

Conclusion

This study shows that mothers of children with disabilities (CWD) face a range of psychological, social, and caregiving challenges that affect their mental health and quality of life. They experience silent burnout due to concerns about their children’s health, unpredictable daily challenges, limited medical information, role conflicts, and lack of social and professional support. These challenges may contribute to anxiety, depression, frustration, self-dissatisfaction, and social isolation, highlighting the significant burden of caregiving.

To support mothers of CWD, practical recommendations include providing counseling and stress-management support by healthcare professionals, conducting awareness programs and creating flexible learning environments by educators, and ensuring coherent referral systems and financial support by policymakers. Additional strategies such as role redefinition programs, personal empowerment initiatives, and opportunities for recreational activities may further help reduce caregiving stress and enhance mothers’ wellbeing.

Limitations

This study was conducted on a sample of mothers recruited from a single geographical area. Moreover, some participants might have avoided sharing some aspects of their experiences. Consequently, the findings of this study may be affected by the immediate sociocultural context and may not be transferable to all mothers of CWD.

Abbreviations

CWD

Children With Disabilities

COREQ

Consolidated Criteria for Reporting Qualitative Research

MAXQDA

MAX Qualitative Data Analysis software

Authors’ contributions

HA designed the qualitative study, developed the interview guide, and conducted the initial data collection and transcription. MK contributed to the research design, participated in data analysis and thematic coding, and assisted with data interpretation. LT was involved in conducting interviews, managing data organization, and contributing to the analysis process. MT developed the theoretical framework, guided the data analysis, synthesized the findings into a coherent narrative, and critically revised the manuscript for intellectual content. All authors read and approved the final manuscript.

Funding

This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

Data availability

The anonymized dataset used and/or analyzed in the current study is available from the corresponding author (Mohammad Taher; e-mail: tahermohammad38@gmail.com) upon reasonable request.

Declarations

Ethics approval and consent to participate

This qualitative study involving human participants was conducted in accordance with the Declaration of Helsinki. Ethics approval was obtained from the Ethics Committee of Saveh University of Medical Sciences (Approval No. IR.SAVEHUMS.REC.1400.010). All participants provided their informed consent freely.

Consent for publication

All participants provided written informed consent for participation in the study. In addition, participants explicitly agreed to the publication of anonymized direct quotes from their interviews, ensuring their confidentiality and privacy.

Competing interests

The authors declare no competing interests.