The Emotional and Psychological Impact on Families Raising Children With Special Needs: A Primary Care Perspective

ABSTRACT

Background and Aims

Families of children with special needs face sustained emotional, psychological, and social challenges that can profoundly influence both caregiver well‐being and child health outcomes. Primary care clinicians are uniquely positioned to address these needs longitudinally, yet the psychosocial dimensions remain under‐recognized in routine practice. This review aims to synthesize existing evidence on caregiver burden and identify opportunities for enhanced primary care engagement.

Methods

A narrative review was conducted using PubMed, PsycINFO, and Google Scholar to identify articles on “caregiver burden,” “special needs children,” and “primary care support.” Eligible studies included peer‐reviewed research, reviews, and guidelines addressing psychosocial outcomes and primary care interventions. Literature was analyzed through a primary care perspective, emphasizing caregiver mental health, family functioning, and healthcare system navigation.

Results

Evidence consistently demonstrates high rates of caregiver stress, anxiety, depression, and burnout, compounded by marital strain, role imbalance, and financial burden. Key risk factors include socioeconomic disadvantage, fragmented care coordination, and lack of culturally responsive support. Protective factors encompass strong social networks, access to multidisciplinary care, and proactive primary care engagement. Despite existing guidelines advocating family‐centered models, gaps persist in systematic screening, timely referral pathways, and integration of psychosocial interventions into primary care workflows.

Conclusion

The emotional and psychological health of families raising children with special needs is integral to optimal child outcomes. Primary care must evolve toward comprehensive, family‐centered frameworks that embed mental health screening, caregiver support, and coordinated interprofessional care into routine practice. Addressing these gaps will require policy alignment, workforce training, and targeted research to operationalize psychosocial support as a core element of pediatric primary care.

1. Introduction

The number of children with special needs, such as developmental, behavioral, or intellectual disabilities, is on the rise. These children, often referred to as Children with Special Health Care Needs (CSHCN), are those who have or are at increased risk for chronic physical, developmental, behavioral, or emotional conditions and who also require health and related services beyond that required by children generally [1]. This prevalence has been steadily increasing over the past 20 years and is now estimated to be 13%–20% of all children in the United States, with a global trend showing a similar rise [2].

As the number of children with special needs increases, the emotional and psychological impact on families has emerged as a significant concern in clinical and public health practice. Parents and other caregivers of these children consistently report elevated levels of caregiver burden and parenting stress. The burden and stress are compounded by intensive daily care requirements, financial hardship, low social support, and the emotional weight of coping with uncertain prognoses [3]. Families also frequently face barriers to obtaining adequate care, such as inadequate insurance coverage, long waits, fragmented services, and a lack of care coordination [4, 5]. These problems have the potential to adversely affect not only caregivers' well‐being but also the quality and continuity of care the child receives [6]. Here, the primary care provider (PCP) plays a crucial role in meeting the needs of the child and the family. Primary care practices are often the initial and most stable point of contact for families. They are well‐positioned to detect caregiver stress, intervene early, and connect families to community‐based services [7]. Despite the challenges, the role of the PCP in this process is central to addressing these challenges.

The purpose of this narrative review is to discuss the emotional and psychological effects of caregiving for children with special needs, with an emphasis on caregiver burden and parenting stress. It also discusses the changing role of primary care providers in identifying and reducing these burdens, especially as they relate to access to care and systemic barriers. These effects can manifest in various ways, such as increased anxiety, depression, and feelings of isolation.

2. Methodology

A narrative review was conducted to examine caregiver burden, psychosocial stressors, and primary care access among families of children with special health care needs (CSHCN). A comprehensive search of PubMed, PsycINFO, Web of Science, and Google Scholar was performed for studies published between January 2015 and March 2025. This 10‐year window was selected to capture contemporary developments in family‐centered primary care, care‐coordination models, and recent policy updates affecting CSHCN.

Full search strings for each database, including Boolean operators and field tags, are provided in Appendix 1 to ensure reproducibility. The core search concepts included caregiver burden/parenting stress, CSHCN, and primary care access. An example search string for PubMed was:

(“caregiver burden” OR “parenting stress”) AND (“children with special health care needs” OR “CSHCN” OR “special needs children”) AND (“primary care” OR “access to care” OR “barriers to care”) (see Appendix 1).

Additional synonyms and related terms were included to broaden retrieval while maintaining relevance.

2.1. Screening and Selection Process

Two authors independently screened titles and abstracts, followed by full‐text assessment of potentially eligible studies. Disagreements were resolved through discussion and consensus. Duplicate records were removed by manual cross‐checking.

2.2. Inclusion and Exclusion Criteria

Eligible studies included primary research (cross‐sectional studies, cohort studies, qualitative research) as well as secondary research (systematic reviews, meta‐analyzes, and practice guidelines) addressing caregiver burden, psychosocial outcomes, family stress, or primary care access for CSHCN. Only peer‐reviewed, English‐language publications were included. The restriction to English‐language literature is acknowledged as a limitation and potential source of publication bias. Studies unrelated to the topic, those lacking accessible full texts, or those not meeting the conceptual focus were excluded.

2.3. Consideration of Study Quality

As is typical for narrative reviews, no formal risk‐of‐bias tool was applied. However, the synthesis considered key indicators of study quality, including clarity of methodology, sample size, study design, and validity of outcome measures. Greater weight was given to studies with rigorous design or clear methodological reporting [8].

3. Emotional and Psychological Impact

Providing care for children with special healthcare needs, albeit rewarding, comes with its own set of challenges. The responsibilities may vary according to the specific needs of the child, social support, the household's economic conditions, and the caregiver's spiritual beliefs and coping mechanisms.

3.1. Parental Anxiety and Depression

Caregivers are prone to stress, despair, depression, and anxiety, and their quality of life is adversely affected. Studies show that more than half of the caregivers had moderate and severe caregiving burdens and reported symptoms of depression. A positive relationship can be established between the caregiver burden of parents and depression scores, and as the caregiver burden increases, depression scores increase proportionally in individuals with depression [9].

Consequently, caregivers might report sleep disturbances, physical or mental health symptoms, changes in personal plans, work adjustments, and financial problems. Caregiver burden often entails prioritizing the child's needs over those of the caregiver and other family members, to the extent of relocating with the family and quitting jobs to provide adequate care and education for the child with special needs. Guardians of the affected child report being burdened by constant care tasks that limit their leisure time, leading to exhaustion and fatigue [10].

The added financial burden of caring for a chronically diseased child, including out‐of‐pocket costs and reduced income due to work disruptions, causes financial and material vulnerability. Findings reveal that economic hardship also contributes to family distress in the context of childhood illnesses [11].

Long‐term caregiving can have physical, psychological, and financial implications and is linked to increased stress, morbidity, and mortality. In caregivers of children with special healthcare needs, poorer caregiver physical health, psychological distress, cognitive problems, and emotional problems have been reported [12].

3.2. Guilt, Grief, Burnout

Parents of children with special needs may struggle with accepting reality and the loss of their “expected child”. Authors have described “ambiguous loss” as circumstances in which the child is physically present but emotionally distant; conversely, it may be used to define a caregiver who is either physically absent or psychologically absent. Parents' grieving reaction to a distressing diagnosis may present as “chronic sorrow” and “non‐finite grief.” Such families would continually revisit the different stages of grief, especially when faced with developmental milestones that their child could not reach [13].

Burnout is characterized as a state of physical, emotional, and mental exhaustion; guardians of children with special needs consistently experience more burnout than parents of children without higher healthcare demands. Burnout may present with chronic fatigue, feelings of despair, and a sense of being emotionally drained. Mothers may fear judgment and feel pressured to hide the struggles associated with caregiving, which can contribute to social isolation. However, the importance of community support cannot be overstated. Family resilience, which encompasses the ability to endure and adapt in the face of adversity, can be an asset. Sharing responsibilities, community support, and professional counseling help prevent burnout and preserve psychological well‐being [14].

Caregivers may often experience guilt from perceived shortcomings in fulfilling the needs of a child with autism, or from the inability to balance caregiving with other aspects of their lives. Seeking informal help is associated with a higher sense of guilt among caregivers due to the added financial strain. Caregivers may react to the chronic stressors with emotional responses such as ‘outbursts of anger’ and ‘crying fits’ [15].

3.3. Marital Strain

The marital status of caregivers has a complex relationship with the stress they experience. Among caregivers of children and adolescents with Down Syndrome, 53.6% of participants were in a stable relationship and did not identify a statistical significance with burden. Contrarily, a study suggests that single caregivers of children with cancer experience greater burden than committed caregivers [16].

Depending on the family structure and socio‐cultural values, the burden of providing care is often placed on the mother. A lack of spousal support can exacerbate marital problems, lead to social isolation, and limit the time available to attend to personal affairs and care for other children [17].

Feelings of rejection, sadness, resentment, and dissatisfaction often accompany the birth of a disabled child. The family may isolate itself from its social environment and spend time and money providing for the child's needs. Marital satisfaction is linked to greater emotional and social support, effective communication, and mutual understanding between spouses, which in turn creates a stable family environment and improves the quality of life [18].

Studies may yield varying results in establishing a correlation between relationship satisfaction and the presence of challenging child behaviors. While some studies demonstrate that children with autism spectrum disorder exhibit complex behaviors that can significantly strain marital relationships, others suggest that such an association does not exist. A report also shows that almost 50% of participants stated that having a child with autism strengthened their marital bond, even though previous research suggested higher divorce rates among parents of children with ASD compared to the general population. It is proposed that a marital alliance, a shared partnership aimed at achieving a common goal, and a sense of collaboration can facilitate a higher quality of marital relationship. Contrastingly, spouses who exhibit differing attitudes and have an uneven distribution of responsibilities between them struggled to maintain a cohesive marital relationship [19].

3.4. Sibling Challenges

Siblings of children with disabilities are at an increased risk of emotional, social, and behavioral struggles. A meta‐analysis study described the negative consequences on psychological and social functioning, particularly in peer activities, among such siblings. Poorer behavioral functioning was noted among siblings of children with more severe disabilities, especially at a younger age, and they reportedly benefited from supportive interventions [20].

Siblings of individuals with cognitive and or physical disabilities may have long‐term impacts on their stress levels and are more likely to develop mental health problems. The parents may neglect some siblings as they are focused on providing care for the special needs child. This may lead the sibling to either act as a parental figure toward the sick child or develop feelings of resentment due to a lack of parental support. However, it's important to note that siblings of children with special needs also report positive experiences and closeness to their siblings, as well as a sense of protectiveness. Their role in the family is significant and should be acknowledged [21].

Whilst findings of the overall effect on siblings of growing up with a special needs child are mixed, factors such as older age, female gender, premorbid distress, lower social support, and family conflict have been linked to worse sibling outcomes. Siblings of children with cancer are at an increased risk of depression, posttraumatic stress symptoms, poorer quality of life, lower healthcare utilization, and internalization and externalization in comparison to siblings of healthy children. Resilient outcomes are also significantly linked to siblings of children with special needs [22].

Siblings of special needs children may experience greater victimization and exhibit more frequent bullying tendencies than siblings of typically developing children. Conflict among these siblings may contribute to an inclination towards social conflict with peers. The sibling may have decreased school engagement and poorer self‐esteem. Positive peer relationships and family resilience should be inculcated to improve the psychosocial outcomes in this group [23].

Siblings of individuals diagnosed with Autism Spectrum Disorder (ASD) may experience a perceived obligation to accommodate their sibling's behavioral and emotional needs. A sibling may be very close to their disabled brother/sister and appreciate their uniqueness, but may still experience shame, burnout, fear, and discomfort, especially in moments where the special needs child portrays aggression and anger. They may exhibit more compassion and empathy, as well as an increased sense of responsibility towards their sibling and towards raising awareness and promoting acceptance for the condition. The protective inclination of the sibling may hinder their social interactions, as they endeavor to shield the child with special needs while simultaneously contending with adverse attitudes from peers. Since siblings may experience a different dynamic in terms of care from their parents, having social support from friends and extended family may help them cope [24].

3.5. Stigma, Social Isolation, and Spirituality

In certain societies, disabilities may be associated with beliefs that they are a result of curses, sin, or moral failings within the family. This may lead to social unacceptance of the family and having to face labels, abuse, and shame. The child or the entire family unit may experience avoidance and exclusion in their communities or extended families, especially in children with congenital or early‐onset conditions, like cerebral palsy, which are culturally associated with supernatural causes.

Caregivers can feel coerced into traditional rituals or practices, which causes them to withdraw socially. Several caregivers found spirituality helps them cope with stigma; believing in a “divine plan” and considering their child a “gift from God” allowed them to garner a sense of acceptance and love [25]. A study indicates that family caregivers without a religious belief had 2.7 times higher chances of experiencing elevated levels of burden compared to those who affirmed having a religious belief [16].

Stereotypes and prejudices, along with a lack of societal awareness about disabilities, marginalize families of children with disabilities. Parents may face blame, particularly in behavioral conditions such as ASD, without physical attributes. Social judgment can lead to internalization of these stigmas and foster feelings of shame among caregivers, leading to social isolation. Interventions to increase public awareness about such conditions through media and simulation can lower levels of affiliate stigma [26].

Caregivers who exhibit gratitude and use various coping styles of turning to religion, planning, positive reinterpretation, and have a strong social support have lower depression levels. Spiritual and religious beliefs play a protective role in mediating caregivers' mental health. Creating means for caregivers to adopt positive coping styles and building a community of people will yield positive results [27].

Socially supported caregivers exhibit more dispositional gratitude and feel more accepted, reporting lower levels of perceived stress [28]. Social support from family and friends in the form of psychological and material resources mitigates psychological distress and reduces physical and mental health complaints among caregivers [29].

4. The Role of Primary Care Providers

Primary care providers—general practitioners, pediatricians, and family physicians—play a salient part in supporting families raising children with special needs. Generally, PCPs serve as the first point of contact for families seeking medical assistance in most of the health system; thus positioning them in a place where they are not only capable of addressing a child's medical issue but also the emotional and psychological well‐being of families in distress due to constant caregiving [30, 31]. This section discusses how PCPs can employ various strategies to alleviate the distress of those who are responsible for taking care of children with special needs.

4.1. Early Screening and Identification of Caregiver Distress

Parents and guardians caring for children with complex conditions tend to experience pronounced mental and physical strain. A population survey conducted across 14 different countries indicated that 50% of parents met the depression criteria, while 69% exhibited anxiety. Furthermore, caregiving duties impose a huge time burden. Based on the findings of one study focusing on families caring for life‐threatening pediatric illness, caregivers provide an average of 30 h per week, and almost 40% describe their role as burdensome [32].

These findings highlight the need for a proactive approach to provide assessment for caregivers within primary care. Thus, routine screening of parents and guardians enables the timely detection of anxiety, depression, and burnout. Thus, preventing their development from a severe crisis [32].

The early screening is vital as it helps to assign, refer, and provide caregiving families in distress with proper emotional and psychological support. In a community‐based health care system, it has become a routine component of pediatric care for PCPs to screen for caregivers [33, 34].

For instance, the American Academy of Pediatrics (AAP) recomm ends the screening of mothers for postpartum depression at infants' 1, 2, 4, and 6 months visits, enabling PCPs to provide support in the wake of positive detection [35]. A statewide initiative implementing the Edinburgh Postpartum Depression Scale (EPDS) at these visits significantly increased screening at all four visits (p < 0.01). The trend showed positive screens were more common among mothers with prior mental health problems or recent food or housing insecurity [35].

This screen approach can be expanded to families of older children with complex needs. In many cases, families struggle to separate the ‘care’ component from the relationship with the child. Thus, they do not voice their concern [36].

In a 2025 pilot program based in an urban medical home, the mean caregiver stress T‑score was 48.8 (SD 13.9) on a 27–77 range. These values indicate moderate stress, and scores did not differ by neighborhood childhood opportunity index [37].

PCPs can devise screening programs, where all the families caring for special children undergo screening during routine health maintenance visits. The caregivers with elevated stress scores in the screening can be referred to on‐site social workers, psychologists, and nursing care managers [37].

This system serves as an ideal illustration for systematic screening. It shows how a methodical identification process can trigger direct support interventions. This system aligns with global recommendations (e.g., U.K. guidelines by NICE) [36, 37]. By normalizing screening for caregiver distress as part of routine care, PCPs create opportunities for early intervention before burnout or severe mental health issues manifest [38].

Early identification is especially crucial in low‐resource settings, where specialist services are scarce. This is evident from the result of a study of 170 parents of children with intellectual disabilities in Malawi. These parents belonged to lower socioeconomic classes, and 70 parents (41.2%) showed distress above the threshold value [39]. In such contexts, PCPs may be the only professionals regularly seeing the family.

A review cited in the Malawi study showed that 47%–50% parents of children with intellectual disabilities meet the criteria of psychological duress. This review was conducted in Low and Middle Income Countries (LMIC), like Kenya, Kuwait, and Qatar [39]. Indeed, studies from diverse countries show that many caregivers do not seek help until crises emerge, often due to stigma or lack of awareness [40].

4.2. Empathetic Communication Technique

Besides screening, the way clinicians interact with the caregiving families also influences their experience. The component of effective support also relies heavily on empathetic, effective, and family‐centered communication. It has been observed that PCPs who tend to listen actively, acknowledge the struggles and challenges of caregiver families, and foster a trusting relationship can greatly alleviate the caregiver stress, anxiety, and depression [41, 42].

Qualitative analysis of pediatric intensive care conferences shows that “unburied” empathic statements (expressions of understanding followed by a pause) elicit deeper emotional disclosure from families and strengthen alliance. Compared with “buried” statements embedded in medical jargon, unburied empathy was associated with a 71% rate of alliance responses and an odds ratio of 18 (95% CI 10.1–32.4) for deepening conversation [43].

These findings show that empathy and validation from PCPs help to eliminate the sense of isolation, loneliness, marginalization, and dismissiveness in caregivers, making them feel strong in their journey. The AAP's policy on family‐centered care emphasizes “listening to and respecting each child and their family” as a core principle [44]. Thus, a sensitive primary care clinician can create a safe space for parents to express these emotions without judgment [45, 46].

This mode of communication establishes trust between families and PCPs. Research findings indicate that caregivers who feel a strong trust in their child's healthcare provider are more likely to engage in care and utilize support services [47]. Based on an AAP report, their special needs with complex conditions have fewer complications and improved developmental progress [48, 49].

In practice, PCPs can use service approaches and techniques to evoke empathy. This includes active listening, acknowledging and appreciating hurdles and the role of caregivers simultaneously, providing encouragement, private discussion groups, and support for primary care clinicians. Even small actions like asking about the caregiver's health or stress level during the appointment convey concern and a supportive solution [50].

4.3. Referral Pathway

Screening and communication must be linked with tangible support actions. PCPs should act as an intermediary to provide access to more specialized emotional and psychological support. They should coordinate referrals for mental health care, social services, and community resources that families caring for special children may need. Considering that providing care for children with special needs inflicts serious taxation on the family's emotional, social, and financial resources, timely referrals are critical to obviate caregiver burnout [37].

It is critical for PCPs to establish cogent protocols, SOPs, and regulations to assign families to appropriate services that fit their needs. These services include on‐site behavioral health specialists, social workers, or external agencies. A rigorous identification process complements an effective referral pathway. When a PCP identifies caregiver psychosocial needs (whether through screening or clinical intuition), swift referral can facilitate access to counseling, psychiatric care, support groups, or respite services [40, 42, 45, 85].

Research findings demonstrate the importance of the integration of a clear referral pathway with an on‐site identification program. In these programs, caregivers must be evaluated based on stress scores. Subsequently, caregivers with high stress scores were immediately referred to the clinic's dedicated social worker or psychologist [51].

In a 2025 pilot program at an urban pediatric complex care clinic, 125 caregivers were routinely screened for stress during primary care visits. All caregivers who scored above a clinical stress threshold (T‐score > 55) were immediately referred to the clinic's on‐site social worker or psychologist for support [37].

On‐site referrals also lead to increased follow‐through of appointments as well. When a referral is integrated on‐site, 93% of families are seen on the same day. If not same‐day, median wait is reported to be around 11 days, which increases to 48 days without integration. On‐site integration drastically increases referral follow‐through after initial screening [52].

In one study, 100% of patients who received a ‘warm handoff’ went to see a mental health expert. This is dramatically higher than traditional referrals follow‐through, which is 58% [53].

An immediate and proactive referral pathway can help avert severe crises stemming from anxiety and depression of caregivers [35]. One study focusing on a pediatric integrated mental health program showed improved psychological health levels in patients enrolled in their program. It showed a 44% reduction in anxiety symptoms and a 62% decrease in depression symptoms among children and adolescents engaged in their integrated mental‐health program [54].

4.4. Care Coordination and Family Centered Approaches

Findings from studies suggest that care systems can be strengthened for children with special needs through the involvement of multiple specialists, therapists, educational providers, and community agencies.

An exceptionally coordinated system disentangles families from the burden of managing fragmented services that special care children need. Several studies present evidence that supports the benefits of care coordination in primary care facilities. That families who receive extensively coordinated care tend to exhibit lower stress levels and fewer unfulfilled demands [48, 55].

A large national study of over 40,000 children with special health care needs found that when primary care practices provided family‐centered care and helped coordinate specialist referrals, families had 15%–32% lower odds of experiencing time burdens related to arranging care and were significantly less likely to reduce work or other activities to care for the child. Thus, care coordination can ease the emotional and logistical load on the families' minds [56].

A qualitative study of top‐performing pediatric medical homes observed that their care coordination shifted from reactive problem‐solving to a proactive, systematic process. Rather than waiting for families to report a crisis, care coordinators would periodically check in, anticipate upcoming challenges and arrange services in advance [56, 57].

Various studies have highlighted critical elements necessary for seamless coordination in a care system: good communication, provider knowledge, family education, and addressing insurance and financial barriers [56].

According to studies, a family‐centered approach acknowledges the fact that caring for a child with special needs affects the entire family system. Thus, the family unit should be the focal point of care rather than just the patient. All healthcare decisions should be made through the lens of family values, preferences, empathy, and acknowledgment [55].

PCPs make their clinical services family‐oriented through a set of policies, regulations, appointments, and everyday interactions. In practice, it entails involving parents as partners in care scheduling and planning, respecting their cultural and socioeconomic circumstances, and tailoring care conducive to their conditions [44].

This might include tailoring a flexible and special schedule for families who have limited respite care, or providing linguistic and interpretation services to families who struggle with language proficiency barriers. It is also recommended to acknowledge the caregiving prowess that families may develop over an extended period—parents often become highly knowledgeable about their child's condition and what works or doesn't [44, 51, 55, 58].

In 2024, a systematic review in Heliyon with a focus on families of children with intellectual disabilities presented nine critical components for a family‐centered care system. These components include shared making, family education, respect for culture, family engagement, and emotional support. The review explored the relationship between these components and a higher degree of family empowerment, satisfaction, and well‐being in the case of special needs [55].

Culturally sensitive and family‐centered care approaches are deemed best for middle‐ to low‐income countries and diverse healthcare systems where social stigma is associated with disabilities. For instance, in Malawi and Pakistan (resource‐limited settings with significant stigma around disability), involving community leaders or social workers who share the family's cultural background in care discussions has been suggested as a way to break down barriers to support [40].

5. Summary

PCPs are salient entities in assuaging the distress for families and caregivers dealing with children of complex medical needs. Several pieces of evidence encourage the adoption of multifaceted approaches. These approaches include routine screening to detect distress early, empathetic communication that validates caregiver experiences, efficient referral pathways linking families to mental health and social services, and proactive care coordination centered on the entire family. Taking cultural and contextual factors into account ensures that interventions are fair and available to everyone. By using these strategies, PCPs can lower the stress on caregivers and improve the health of children, which is part of their job to provide comprehensive, family‐centered care.

5.1. Barriers in Primary Care

Caregivers of children with special health care needs (CSHCN) face multifaceted challenges that are structural, emotional, logistical and financial in nature. The literature reveals a consistent narrative of overwhelming caregiver burden, systemic gaps, structural barriers and inequities. These hinder access to care and support, contributing to the emotional and psychological impact experienced by these families.

5.2. Structural and Systemic Barriers

5.2.1. Problems Related to Finance, Insurance and Other Services

Scheduling and following up on the appointments and treatments resulted in out‐of‐pocket costs and lost work hours that caused great difficulties in the care of these children with special health care needs (CSHCN). Furthermore, limitations related to insurance and lay‐offs from work created more problems for the parents and as a result, the children [59, 60, 61, 62, 63, 64, 65, 66, 67, 68]. For instance, caregivers with household incomes < $40,000 reported higher mean distress scores than those with incomes ranging from $40,000 to $79,999 (β = 4.45, 95% CI 0.04–8.87, p = 0.05) [59].

The type of insurance was also a contributing factor with public insurance associated with greater and better access to mental health services for both the family and the child compared to private insurance [62].

However, in some studies the reimbursement for public insurance was lower compared to private insurance [68].

Moreover, laboratory testing such as genetic testing had higher costs and not a lot of laboratories were offering these tests. This made it harder to reach a diagnosis and initiate treatment for these rare diseases, even more so in less developed countries [69].

5.2.2. Problems Related to Location and Relocation

Distance from the health care center was contributing to barriers in accessing care. Residence in an urban area was associated with a reduced need for availability barriers [62, 70]. Those living in urban locations had significantly lower rates of reporting location or transportation barriers to care (OR = 0.44 [0.27, 0.72]) [62].

In addition, it's been shown that homebased care systems are more cost effective, resulting in an improved quality of life across multiple domains for these children with special health care needs (CSHCN) [71]. It was also reported that some clinics didn't have appropriate accommodation for the accompanying parent of children with special health care needs (CSHCN) [65].

5.2.3. Lack of Adequate Information and Treatment Resources

Parents reported that they were not offered any advice earlier in the treatment or diagnostic course. This lack of education prevented them from adopting practices that would have benefited their children. The study also highlighted a lack of timely access to proven treatment modalities in addition to a lack of support and empathy provided [62, 65, 69, 70, 72]. Parents of these children also reported how, at times, they were able to obtain more information from other families in a similar situation than their own healthcare provider [70].

5.3. Personal/Caregiver‐Level Barriers

5.3.1. Caregiver Inexperience

A lack of the ability of the caregivers to recognize the symptoms of diseases like severe primary insulin‐like growth factor‐I deficiency (SPIGFD) and asthma usually resulted in delays in accessing treatment. Furthermore, because they saw asthma as a disease having a hereditary basis, they acted in denial following the diagnosis because of the stigma attached to it. Caregivers were also concerned regarding the long‐term treatment outcomes, self‐management of episodes and recurrence of the condition [60, 69, 73].

There was a lack of awareness around conditions existing at the same time such as Down syndrome (DS) and autism spectrum disorder (ASD) (DS‐ASD). Caregivers also reported difficulties understanding what their children needed. This was distressing as parents reported that their child didn't make much progress even after the treatment [74].

5.3.2. Need to Maintain Multiple Roles With Limited Support

Findings from the studies illustrated how it was hard for parents to balance multiple roles, including parent, carer, and co‐therapist [63, 65, 66, 68, 71, 72]. Moreover, because of the professional space boundaries, there were limited resources and prowess with the treatment protocols for children with special health care needs (CSHCN), limiting parents' involvement in decision making [72].

It was also highlighted that there is a need to not only prioritize and improve treatment but also to rectify the perception that the public has regarding conditions like asthma and OCD [72].

5.3.3. Linguistic, Cultural and Ethnic Barriers

Studies showed how certain ethnicities were more likely to experience barriers in accessing care like people having a low education level and a reduced language proficiency. These people found it difficult to schedule and follow‐up on an appointment. It was also reported that less developed countries have poor availability when it comes to the access of health care facilities and resources [71].

5.4. How to Tackle This?

Using community focused solutions that encompass bilingual and bicultural healthcare providers in addition to the adoption of contemporary and translated, region appropriate patient education materials would improve the access to care. Moreover, campaigns that raise awareness regarding the gaps that exist in healthcare systems is the need of the hour. This should be followed by the implementation of effective solutions, overcoming barriers in the future. Plans to shift modern healthcare facilities to rural areas should be explored as these areas have reported poor access to care even when compared to the urban settings in these countries.

5.4.1. Parent Perceptions

It was also found that, in some cases, parents weren't willing to visit a healthcare provider. This was because they thought that the condition wasn't serious and they wanted to cure it themselves. As a result, if the parent didn't think the treatment to be beneficial for the child, he/she was more likely to discontinue it. The barriers at the start of the treatment shape patient perceptions which in turn become the biggest barrier, resulting in the discontinuation of the treatment itself [67].

5.4.2. Fragmentation of Care

Fragmentation of care was reported as a significant concern, especially in the case of rare diseases. Keeping track of the different appointments, making sure that the child was receiving the adequate treatment and meeting these different healthcare providers got very overwhelming for some of these parents, leading to gaps in the continuity of care and thus a blunted treatment response and a worse prognosis [65].

5.5. Emotional and Psychosocial Barriers

5.5.1. Social Repercussions

Caregivers of CSHCN have reported that instead of achieving extended support from relatives and close family members, they are often subject to discrimination, rejection and avoidance. This exacerbates the existing feelings of isolation and depression. This can make it harder for them to access care including the necessary help for these psychiatric issues [71].

5.5.2. Emotional and Behavioral Developmental Problems

Children with special health care needs (CSHCN) who were suffering from emotional and behavioral developmental problems (EBDP's) were also much more likely to experience these different barriers to health care access. The rates of perceived need for family mental health care and reported unmet family mental health needs increased for CSHCN with EBDPs from 7% in 2005% to 10% in 2009 [62].

5.5.3. Lack of Psychosocial Support

In addition to there being reports of healthcare professionals being ignorant and unempathetic toward the parents and children, it was also reported that they weren't made aware of the various psychosocial support services. Those who did use them found the clinical psychologists to not be adequately trained for these situations. In addition, there was no follow‐up regarding the psychosocial support which ended as the parents and the children left the hospital [65].

5.5.4. Lack of Understanding

The parents reported a lack of understanding and accommodation by school and other institutions [60]. The lack of social support also proved to be a barrier with rare diseases, alone or in combination, with the latter being affected by it the most. Children with Down syndrome (DS) and autism spectrum disorder (ASD) (DS‐ASD) reported that they felt like they didn't belong to either community. This hindered access to further care [65, 74].

5.6. Treatment Specific Barriers

5.6.1. Prolonged Treatment Course and Side Effects

Conditions that require a prolonged treatment course such as asthma and psychiatric illnesses usually result in higher non‐compliance rates. It has also been reported that prolonged treatment may cause boredom in children, making it harder for them to maintain the treatment schedule. There were also concerns regarding the adverse effects related to the different treatment modalities [69].

For instance, in the case of asthma, caregivers were concerned that long term glucocorticoid therapy would affect the growth and development of children [60]. In individuals with severe primary insulin‐like growth factor‐I deficiency (SPIGFD), they are hesitant to prescribe recombinant human insulin growth factor‐1 (rhIGF‐1) due to the association with hypoglycemia [69].

5.6.2. Limited Access to Care for Conditions Unrelated to the Disease

It has also been reported that CSHCN face difficulties accessing care unrelated to their primary disease. This is because of the unwillingness of the healthcare provider to deal with the uncooperative behavior, other ongoing systemic and therapy options that would interfere with care. This is one of the reasons that conditions like tooth decay would worsen over time for CSHCN [63].

Caregivers of CSHCN face various barriers that are systemic, psychosocial, caregiver, provider and treatment specific. These cause increased out of pocket costs and lost work hours, hindering access to care and contributing to anxiety and distress, thus delaying diagnosis and prolonging treatment.

6. Strategies to Support Families

Primary care clinicians are pivotal in navigating the well‐being of families with CSHCN. The core motivation driving their involvement is the opportunity to significantly improve the quality of life for these families by delivering comprehensive, patient‐centered care. By staying actively engaged over time, regularly assessing psychosocial well‐being, integrating behavioral health into routine care, and coordinating referrals effectively, clinicians can create a supportive environment. This approach not only reduces caregiver stress and fosters family resilience but also ensures holistic, trauma‐sensitive support that enhances overall family functioning.

6.1. Clinical and Psychological Interventions

6.1.1. Problem‐Solving Skills Training

Problem‐solving skills training (PSST) enhances caregivers' problem‐solving, reduces negative emotions, and boosts quality of life. Children benefit emotionally and behaviorally [75]. PSST empowers caregivers and is well‐suited for integration into primary care and behavioral health.

6.1.2. Parent‐Inclusive CBT and Family‐Based Models

When parents are included in cognitive behavioral therapy (CBT) for children with ASD, caregivers benefit too. They experience less depression, better control of emotions, and more mindful parenting [76]. This evidence supports the use of family‐based treatment approaches in primary care.

6.1.3. Nurse‐Led and Primary Care–Integrated Psychoeducation

Nurse‐led education and counseling programs are practical and easily accessible. They help lower caregiver stress, improve emotional support, and build resilience, especially in areas with fewer resources [77]. Because they are affordable and accessible, these programs work well for primary care teams helping families with high needs.

6.2. Community‐Based Support

Community Health Worker (CHW) programs help with both emotional and practical needs, and have proven to be effective. One study found that these programs reduced caregiver stress, improved health knowledge, and lowered food and housing insecurity for families of CSHCN [78]. Other community programs, like Early Intervention and WIC, help identify and support high‐risk families early on [79].

Population‐level analyzes using the Double ABCX Model of Family Adaptation indicate that both formal services and informal emotional support help caregivers cope more effectively. This highlights the importance of combining clinical and community resources [80].

Digital and peer support networks provide convenient ways for caregivers to access emotional support, share information, and learn from others. Referring caregivers to trusted online communities helps them cope and feel less alone, especially younger parents [81]. Adding digital support to primary care planning helps reach more families. Clinicians may consider sharing brief success stories from peers or parents when introducing these online groups. Hearing about real experiences can reduce skepticism and encourage initial participation, fostering a sense of community and shared goals among caregivers.

6.3. High‐Burden Subpopulations

6.3.1. Congenital Heart Disease (CHD)

Caregivers of children with CHD often face ongoing emotional stress, financial challenges, and complex care needs. These problems can worsen if other health issues, disabilities, or insurance issues are present. Regular emotional check‐ins and working with community programs can help lower long‐term stress for these caregivers [79]. To address financial toxicity, clinicians could benefit from being attentive to specific stressors such as medical costs, travel expenses for specialist care, lost income due to caregiving responsibilities, and the need for specialized equipment. By screening for these cost stressors, healthcare providers can better guide caregivers to appropriate resources and support.

6.4. Medically Complex and Technology‐Dependent Children

Caregivers of children who are medically complex and depend on technology often experience very high levels of stress. They may spend more than 30 h a week providing care, which can lead to physical exhaustion, emotional stress, and financial problems [82]. Regular check‐ins on caregiver well‐being during medical visits are important to prevent further health issues for caregivers.

6.5. Family‐Centered and Cultural Considerations

Caregivers' needs depend on their cultural values, health beliefs, and family setup. Primary care clinicians should communicate in ways that respect cultural differences, involve extended family when appropriate, and tailor care to fit patients' language and financial situations. Studies like the Tokyo Early Adolescence Survey show that mothers of CSHCN often have higher anxiety and depression, but social support can help protect their mental health [83].

6.6. Strengthening Caregiver Activation

Caregiver activation, which encompasses parents' knowledge, confidence, and advocacy skills, is closely linked to improved coping and increased involvement with health and community services. Reviews of parent‐support programs show benefits from peer groups, educational programs, condition‐specific training, CHW models, and self‐management, though effects on self‐confidence vary [84]. Making these programs fit families' financial and social situations makes them more effective.

It is essential to prioritize equity, particularly for families in low‐resource settings who encounter barriers such as limited access to specialists, fragmented services, and financial constraints. Current approaches should clearly address these challenges and offer flexible, scalable solutions, such as community health workers, telehealth, and culturally sensitive care, to make interventions more useful in different health systems. The evidence shows that primary care must become more relationship‐based and responsive to caregivers' emotional and social needs. Supporting caregiver empowerment, reducing stress, and incorporating behavioral health into care are key to helping families and improving outcomes for children [85].

7. Conclusion

Raising a child with special needs imposes sustained and evolving emotional and psychological burdens on families, often compounded by fragmented support systems. Primary care is uniquely positioned as the central hub for early identification, intervention, and ongoing psychosocial support, yet much of this potential remains untapped. Routine integration of caregiver mental health screening, anticipatory guidance, and coordinated evidence‐based interventions into pediatric visits can strengthen family resilience and improve both caregiver well‐being and child outcomes.

Achieving this will require targeted reforms in primary care infrastructure, including the integration of psychosocial services within clinical workflows, enhanced interprofessional training, and the provision of culturally responsive care. However, implementation may be challenged by resource constraints, limited workforce capacity, and variability across health systems. Future research should prioritize scalable, pragmatic implementation strategies and long‐term outcome evaluation to firmly establish psychosocial support as a measurable, standard‐of‐care component for families of children with special needs.

Author Contributions

Muhammad Husnain Ahmad: project administration, writing – review and editing. Masab Ali: methodology, data curation, writing – review and editing. Muhammad Hassan: writing – original draft, formal analysis, data curation, visualization. Rehan Naseer Ahmad: formal analysis, validation, writing – review and editing. Muhammad Usama Yasin: writing – original draft, methodology, data interpretation, visualization. Hareem Fatima: writing – original draft, writing – review and editing, literature review. Muhammad Tayyab: investigation, data curation, resources. Amina Jamil: project administration, writing – review and editing. Azka Qaiser: writing – original draft, writing – review and editing, literature review. Abdullah Zaheer: writing – review and editing, validation. Muhammad Sajjad: writing – review and editing.

Funding

The authors received no specific funding for this work.

Ethics Statement

Ethics approval was not required for this literature review.

Conflicts of Interest

The authors declare no conflicts of interest.

Transparency Statement

The lead author Muhammad Husnain Ahmad affirms that this article is an honest, accurate, and transparent account of the study being reported; that no important aspects of the study have been omitted; and that any discrepancies from the study as planned (and, if relevant, registered) have been explained.

APPENDIX 1. Full Search Strings for All Databases

PubMed

((“caregiver burden”[Title/Abstract] OR “parenting stress”[Title/Abstract]

OR “caregiver stress”[Title/Abstract])

AND

(“children with special health care needs”[Title/Abstract]

OR “CSHCN”[Title/Abstract]

OR “special needs children”[Title/Abstract]

OR “children with disabilities”[Title/Abstract])

AND

(“primary care”[Title/Abstract]

OR “access to care”[Title/Abstract]

OR “barriers to care”[Title/Abstract]

OR “care coordination”[Title/Abstract]))

AND (2015:2025[pdat])

PsycINFO

AB(“caregiver burden” OR “parenting stress” OR “caregiver stress”)

AND

AB(“children with special health care needs” OR “CSHCN” OR “special needs children”

OR “children with disabilities”)

AND

AB(“primary care” OR “access to care” OR “barriers to care” OR “care coordination”)

AND

DT(20150101–20250331)

Web of Science

TS=(“caregiver burden” OR “parenting stress” OR “caregiver stress”)

AND

TS=(“children with special health care needs” OR “CSHCN”

OR “special needs children” OR “children with disabilities”)

AND

TS=(“primary care” OR “access to care” OR “barriers to care” OR “care coordination”)

Refined by: Publication Years = 2015–2025

Google Scholar

the following terms were searched in multiple iterations with filtering for 2015–2025.

“caregiver burden” “children with special health care needs” “primary care”

“parenting stress” “CSHCN” “access to care”

“caregiver stress” “special needs children” “barriers to care”

Data Availability Statement

Data sharing is not applicable to this article as no new data sets were generated or analyzed during the current study.